JazzieStar

By Darilyn GRYGORUK

JazzieStar

Jeans 4 Genes Day XO
In memory of our beautiful daughter Jazmin. Born October 1989. She begun losing her sight around 9 months of age and was diagnosed @ 16 months with Leber's Congenital Amaurousis (a rare inherited eye disease causing damage to the retina). Her physical abilities continued to regress and when Jazzie* was nearly 27 months old we were handed a text book and told, "Read that paragraph, we THINK she has a NEW STRAIN of Infantile Refsum's Disease ( to this day we're not 100% sure of what she actually had). A rare, degenerative, terminal, genetic disease. We have never heard of it before, can't treat it, no cure for it. We were told to take her home and love her she will be dead before she's 3". She lost her battle for life aged 8 1/3 years young having never crawled, sat, walked or talked and not being able to do anything for herself except smile. A smile that lit up the room and brightened and enriched all our lives. She left her imprint on our hearts and souls forever.
Research is needed to prevent future generations from being affected with this ( whatever it was)  and all genetic diseases. From researching Jazmin's blood and skin biopsies in USA they now test others. It is still an extremely rare degenerative terminal disease but with research hopefully one day others won’t have to endure what Jazzie* had to endure. All we could do was love cherish and adore her for the short time we were privileged to be her parents. Love and miss you so much Jazzie* our sneaky cheeky kissy face XOXOX

TO START AT THE BEGINNING OF JAZZIESTAR STORY STROLL TO THE BOTTOM AND WORK YOUR WAY UP TO MOST RECENT POST :) 

The original Jazzie* page was through Everyday Hero and raise d $5,043.62. That site no longer exists so I have moved old posts over to this new In Memory page that Jeans for Genes has just launched.

My Updates

REPOST#18 JAZZIE* (JEANS FOR GENES ) 05 AUG 2020

Sunday 28th Mar

24/11/1996 and we all piled in the car and went to Brisbane for the “Make A Wish Christmas Party”. We had a ball and the kids were spoilt by Santa and the organization. Jazmin was her usual laid back relaxed self and spent the day soaking up the happy festive atmosphere. Callum was happy with the activities, food and his present from Santa. Little Rhiane had no idea what the fuss was about and at 9 months didn’t really care as long as she was feed. All three kids had a lovely day and it is such a beautiful function that the foundation puts on every Christmas for terminally ill children, their siblings and parents. A beautiful day when everyone forgets about everything bad and everyone just has fun.

 

Jazmin’s hectic routine continued day in and day out until the end of the year. She is such a happy and content child, nothing seems to faze her and now that she is relatively healthy (healthy for her that is) and her little body has continued to fill out she looks so healthy that sometimes it’s easy to momentarily forget just how sick she actually is. That is until I have to reposition her because she has slipped down or been in the one position for long enough (I don’t want bed sores on that precious bottom), turn the page for her, hold her bottle for her, change her, put a toy in her hand or do one of a million things that are done for her every day. I really don’t think most people realize that she is still and always will be a twenty-four hours seven days a week “job” and that she cannot do a single thing for herself except smile. I honestly believe that there are people who think I exaggerate her disability and they do not believe she is as incapable as I say she is. I honestly believe there are people, including family members, who only see a beautiful delightful little girl sitting positioned against pillows looking at a book and they forget that she didn’t put herself in that position, they forget that she can’t move out of that position until I physically go and move her, they forget that she can’t see the book in front of her, they forget that she can’t talk and ask for a different toy or for something to drink and they forget that she is terminally ill. They forget that she is bloody hard work. Sometimes I even think they forget that she is 7 years old. They also forget or don’t realize how utterly draining and exhausting she is mentally, physically, emotionally and financially and how totally exhausted I always am.................. I love Jazzie unconditionally and will do ANYTHING for her

 

DONATIONS

 NICOLE WARREN• GAVE $11.10   04 AUG 2020   A wonderful cause to support ... lots of love xoxo

JAZZIE* 05 AUG 2020   It certainly is :) Thanks for your support Nicole XX

DYLAN HARMAN• GAVE $108.55      01 AUG 2020  Lots of love from the Harman clan. I will never forget the positive impact you had on me... in hard times and good you all carried jazzie's smile...💪👌

JAZZIE* 01 AUG 2020   Thanks muchly Dylan & all the Harman family for your kind donation. I have so many beautiful memories ( and millions of photos) that include you and your beautiful family XX

CATHY MURRAY• GAVE $33.15    31 JUL 2020

JAZZIE* 01 AUG 2020  Thanks so much Cathy for your kind donation XX

DRAGONS SUPPORTERS CLUB QLD INC • GAVE $350         15 JUL 2020To support our wonderful friends and remember their beautiful daughter. Go Dragons.

JAZZIE* 15 JUL 2020    Thank you for your kind and generous donation to Jeans for Genes through our remembrance page for Jazzie*. Your support each year is greatly appreciated . Much love to you all XXXX

CAROL SIMPSON• GAVE $22.31    07 AUG 2020

JAZZIE* 11 AUG 2020   Thanks so much Carol, your donation is greatly appreciated XX

SHARON BROAD • GAVE $11.10         07 AUG 2020    Sending you much love. And remembering your darling Jazzie*

JAZZIE*11 AUG 2020 Thank you for your support Shazz, muchly appreciated X

LYDIA CARMICHAEL • GAVE $22.31     07 AUG 2020

JAZZIE* 11 AUG 2020Thanks you so much Lydia X

JOHN, DARILYN, CALLUM, RHIANE GRYGORUK • GAVE $108.55         07 AUG 2020

In loving memory of our beautiful precious kissy-face Jazzie*. Always & forever our daughter & sister. Always & forever in our thoughts & hearts. Love you muchly muchly Mummy, Daddy, big little bro & little sis XXXX

ANONYMOUS • GAVE $271.65          07 AUG 2020

JAZZIE* 07 AUG 2020    Such a generous donation to such a worthy cause. I sincerely thank you so very muchly from all of us XX

HELEN WEBB • GAVE $54.84     07 AUG 2020

JAZZIE* 07 AUG 2020  Jazzie* sends huge thanks for your donation Aunty Helen XXXX

MAGGIE JOEL • GAVE $27.34     06 AUG 2020   Every star leaves a trail of stardust.

JAZZIE* 06 AUG 2020   Beautiful words. Thanks muchly for your donation Maggie XX

BRENDA BROAD• GAVE $54.41       06 AUG 2020Remembering Jazzie 🌟💗 Lots of love from Aunty Brenda, Uncle Colin & Cousin Hayley 💕💕💕

JAZZIE* Kissyface Jazzie* says thanks muchly muchly Auntie Brenda, Uncle Colin & cousin Hayley for your kind donation XXXX

NICK GRYGORUK • GAVE $54.41        06 AUG 2020

JAZZIE* 06 AUG 2020   Jazzie* sends huge thanks for your donation Uncle Nicky XX

NICK BEUTEL • GAVE $32.76     06 AUG 2020

JAZZIE* 06 AUG 2020   Thanks Nick, your donation is greatly appreciated

ANONYMOUS  $50.00  OCTOBER 2020  "In loving memory of my favourite and adorable niece Jazzie. Forever loved x"

JAZZIE* Thanks for your donation!

REPOST #17 JAZZIE* (JEANS FOR GENES ) 02 AUG 2019

Sunday 28th Mar

JAZMIN’S 7TH BIRTHDAY 27/10/1996 started off with her waking up to find bright balloons attached to the bed rails. They had glow in the dark fairies on them and I can’t wait till tonight when it is dark enough for them to shine brightly. She spent the morning down at CSS with all her friends where they ate cake, but of course, sung Happy Birthday and played games. She then went home for a quick change into her MCSS school uniform before having yet another party with her school friends at MCSS. I know I’ve said it before, but I will say it again, I sincerely thank you, I thank every child who enriched Jazmin’s life by accepting her unconditionally into their life. Thank you for being able to see past her chair, for being able to see past her inability to see, past her inability to talk, past her inability to do anything. Thank you for every time you spoke to her, every time you lovingly touched her, every time you included her you made that amazing smile of hers shine bright and light up the room.

 

By now the difference in her was remarkable and if you didn’t know better, you’d say it was a different child to the one who’d begun CSS and MCSS back in February. Nine months have made a remarkable difference in both her health and ability and I will now admit that at one stage I didn’t think she would make it to 7 as she was so sick and so skinny. Life just keeps going on and on, Callum’s getting bigger and clever, Rhiane’s getting bigger and clever and YES finally my beautiful kissy-face Jazmin is getting bigger and cleverer.

 

I’m the luckiest mummy in the world; I have three beautiful, clever, content and lovely children whom I love unconditionally and whom I absolutely adore.

 

DONATIONS

DRAGONS SUPPORTERS CLUB OF QLD INC • GAVE $350            20 JAN 2019To support much loved members of our Supporters Club and to remember their precious daughter Jazzie*

JAZZIE* 20 JAN 2019Just received a wonderful surprise email notifying me of your generous donation towards this years fund raising. Your continued support of Jeans for Genes is once again extremely appreciated. With much love XXXXX

NICK GRYGORUK• GAVE $32.76           02 AUG 2019   In our thoughts.

JAZZIE*02 AUG 2019 Thanks Nicky XXXX Your donation is appreciated muchly muchly.

MAGGIE JOEL • GAVE $50     02 AUG 2019   Getting my genes on💞

JAZZIE* 02 AUG 2019

Thank you for your continued support Maggie. Your donation is greatly appreciated XXXX

HELEN WEBB • GAVE $50    02 AUG 2019   In memory of our beautiful Jazzie* Loved and never forgotten 💖

JAZZIE*02 AUG 2019   Jazzie* loved her Aunty Helen . Thank you muchly muchly for your kind donation XXXX

REPOST #16 JAZZIE* (JEANS FOR GENES )31 JUL 2018

Sunday 28th Mar

August 1996 and Nana’s holiday was timed to overlap with John’s trip away to the Birdsville Races because I might be amazing, I might be extra-ordinary, I might be clever and smart and intelligent, but I am still only human and with one very special unique precious princess named Jazmin a toddler and a baby even I, as great as I am, need help. For goodness sake what did you expect me to say, I can’t even go out the house food shopping with the three of them. Just try to picture me pushing a wheelchair, holding onto a 2 ½ year old and a 6 month old and a shopping trolley…. LOL Not happening……

Nana had arrived for her holiday a couple of days before John left and she can see an improvement in Jazmin.

 

September 1996 Jazmin had her first School Athletics Carnival at Currimundi Special School. She must have looked so cute wearing her size 10 tee-shirt especially since at best, on a really good day, she was still at most a size 4. I have no idea what events she participated in but knowing her teachers and aides I can confidently say that Jazmin participated in every single race, jump, roll, push and dance that was on the day’s programme. I can guarantee that she laughed and smiled and enjoyed herself until exhaustion took over and then I bet she had a snooze. I know I’ve probably said it already but I’m about to say it again; the staff are absolutely amazing and I know why families move from other states so that their special children can become a part of this unique environment where I guarantee they will thrive and reach their full potential.

 

October 1996 saw Jazmin have a ball at her first ever “little athletics” special day for the disabled. It was stinking hot but even so she competed, with a lot of help from Daddy, in all the events. She won a red ribbon for her unbelievably great high jump and a blue ribbon for her fantastic discus throwing. Yes! That’s correct a red ribbon for her amazing attempt of 0.3 m in the high jumping. Jazmin high jumping was different to most of the other kids that were participating. Those that could attempted it themselves while Jazmin who can’t even move was literally thrown, well dumped, over the bar and onto the mat by her Daddy. Jazmin loved it; to her it was probably just like bouncing on the trampoline. She needed a great deal of assistance with the discus as it was nearly as big and heavy as her but with Daddies help she threw it 4.46 m and won a blue ribbon.Ribbons that we will treasure forever and remain even today hanging on her special sock -- A red and green striped footy sock that used to be a money sock and turned into a remembrance sock as we pinned on it every pin the kids received on their birthday cards, footy pins, sporting ribbons and every years Jeans for Genes pin.

 

DONATIONS

DRAGONS SUPPORTERS CLUB QLD INC• GAVE $350            31 MAY 2018To support a wonderful family and remember their precious angel

JAZZIE* 31 MAY 2018Thanking the beautiful Dragon Angels from the bottom of our hearts for their amazing donation towards Jazzie* , Jeans for Genes Research 2018. So proud to belong to such a wonderful group of women. Thank you for kicking off this years fund raising. Your continued support and generous donation is once again extremely appreciated. With much love XXXXX

MAGGIE JOEL • GAVE $50     03 AUG 2018

JAZZIE* 03 AUG 2018Thanks so much Maggie :)Your generous donation is greatly appreciated XXXX

BRENDA BROAD• GAVE $54.84     03 AUG 2018In memory of Jazzie*. Lots of love 💕 from Aunty Brenda, Uncle Colin and Hayley Elise 💞💞💞

JAZZIE* 03 AUG 2018   On behalf of our kissy  face Jazzie* thanks muchly muchly Auntie Brenda, Uncle Colin & cousin Hayley XXXX

HELEN WEBB• GAVE $54.84        01 AUG 2018In memory of my beautiful niece Jazzie*

JAZZIE* 01 AUG 2018Thanks muchly muchly Auntie Helen <3>

 

REPOST#15 JAZZIE* (JEANS FOR GENES ) 02 AUG 2017

Sunday 28th Mar

Jazmin 6 YEARS 3 MONTHS, started at CURRIMUNDI SPECIAL SCHOOL 30th January 1996. I’m still worried it’s all going to be too much for her. She went the first week then missed the next 2, as I awaited the birth of her little sister, then she really got into the swing of things, or so they say. I think everyone’s scared to do too much to her because she is still incredibly sick and skinny looking; the skin is literally just hanging off her. I wonder how long it will take before they learn all her little tricks to get out of working, mind you she’ll have them wrapped around her little finger in no time at all.

They tell me she enjoyed herself and had fun and always tried her hardest to participate especially in the morning activities even though she still slept a lot in the afternoons. She even had to do homework..... yes I know I’m actually the one doing it... but I am also talking to her nonstop explaining what we are doing and describing the colours etc. It’s a long slow process but hopefully Jazmin is gaining something.

 

Just a couple of weeks into the term and she has experienced lots of new things including commencing swimming lessons at Kawana Waters swimming pool. As you all know she loves the pool at home and yes she immediately loved the warm water of the therapy pool. She quickly learnt to not only stay floating for an ever extended length of time but to go under the water and to “swim” a special style (with a lot of assistance).

 

Jazmin’s first term of Grade 1 came and went so quickly and although she is very slowly getting bigger and healthier, she is still remarkably sickly looking. She still can’t roll, crawl, sit, see, talk, walk, eat or hold onto things but she is beautiful. Does she have everyone at the school twisted around her little finger? YES of course she does. The older children have races every morning to see who gets to my car first so they can help push Jazmin up to her classroom.

 

On the 7th May she begun horse riding fortnightly with CSS and Riding for the Disabled. This became another new love of hers as she would lay “dead injin” over the saddle and be trotted around on “Rocky’s” back. I send my sincere heartfelt thanks to all the amazing volunteers who made all these wonderful experiences possible for her.

DONATIONS

MALCOLM AND MAREE ELKS  • GAVE $53   06 AUG 2017 With best wishes from our family to yours.

JAZZIE*  06 AUG 2017Sincere thanks Malcolm & Maree for your generous contribution to Jeans for Genes, it is greatly appreciated <3>

UNCLE NICK • GAVE $50       05 AUG 2017 Love you Jazzie

JAZZIE*  06 AUG 2017Thanks muchly muchly Uncle Nick <3>

BRENDA BROAD • GAVE $53       04 AUG 2017In memory of Jazzie🌟 Lots of love from Aunty Brenda, Uncle Colin & Cousin Hayley 💞💞💞

JAZZIE*  04 AUG 2017 Huge heartfelt thanks Brenda, Colin & Hayley XXXX

TRENT SMITH • GAVE $31.80  04 AUG 2017Great cause. Great people.

JAZZIE* 04 AUG 2017Thank you so much Trent X

CHRISTINE PERREN• GAVE $212     04 AUG 2017Worthy people and a worthy cause. Chris & Gareth

JAZZIE* 04 AUG 2017Sincere and heartfelt thanks Chris & Gareth for your very generous contribution to Jeans for Genes, it is greatly appreciated <3>

 STEVEN CATERIS • GAVE $21.20          04 AUG 2017I work in the Department of Human Services. A cousin of Jazmin who works in our department sent us all a link to the newspaper article about her posted on the 'Sunshine Coast Daily' website on 04 August 2017. This is my Jeans for Genes Day gift. Best of luck!

JAZZIE* 04 AUG 2017Thank you so much Steven, your contribution to this cause is greatly appreciated XX

 SHARON BROAD • GAVE $10.60    04 AUG 2017To support a lovely family and remember their beautiful daughter

JAZZIE* 04 AUG 2017Thanks so much Sharon, your donation is greatly appreciated X

DRAGONS DAUGHTER • GAVE $10.60           03 AUG 2017Thinking of Jazzie xx

JAZZIE* 03 AUG 2017Big thanks my dragon daughter XXXX Your donation is greatly appreciated :)

 

 

 

REPOST # 14 JAZZIE* (JEANS FOR GENES )16 JUL 2017

Sunday 28th Mar

As Jeans for Genes 2017 is just around the corner I ask once again that people dig deep to help stamp out genetic illnesses and childhood diseases.................. I sincerely thank the beautiful ladies from the Dragons Angels who kick started this year’s fundraising with their generous donation to Jazzie* <3>

 

As previously stated, Jazmin legally has to do Grade 1 next year when she turns 7 (even tho she doesn’t turn 7 till late October). Unbelievable as it is she is not allowed to repeat preschool despite all her problems and the fact that she is terminally ill. We of course know she is going to do Grade 1 at Currimundi Special School, but we want her to also be with “normal” children and have been pushing for her to attend ½ a day a week at her local primary school.

 

It was the 11th December 1995 before I finally got an appointment with the heads of our local public school to discuss Jazmin attending there. They tried to talk me out of it saying she’d be better off at Special School full time. Just once I’d like other people to believe in my decisions regarding what is best for my daughter, after all I am the only person who is with her full time and I am the only person that fully knows and understands our precious princess. If I say that Jazmin will benefit from attending a few hours a week at a normal school than for goodness’s sake just believe me and help me do what is right for Jazmin and her quality of life. After all it’s not as if I don’t know and understand children. Luckily for Jazmin I am a qualified teacher’s aide and spent nearly ten years teaching, nurturing, molding and helping raise and educate thousands of children so I know the benefits of her being with “normal” children. She has always loved interacting with the kids at day care and no way am I going to take the pleasure of listening to kids having fun away from her after all these years. (Photo shows her day care friends making sure Jazmin didn’t miss out on water play by putting her feet in buckets of water and splashing her)

 

After I explained, and cried (yet again, Oh how I wish I had just one dollar for every tear then I’d be able to offer Jazmin the Word), that all the kids that will be in her class at Special School would be in wheelchairs, that none of them could talk and that she needs to hear children her own age they finally agreed on 2 hours a week attendance for socialization purposes (trial for 1 term). They obviously thought I was crazy, but time will prove me right when they see her pleasure when interacting with the other children. The other children will also benefit from having Jazmin in their classroom just like the children at day care have benefited from knowing Jazmin. They have learnt acceptance and understanding, they have learnt patience and empathy, they have learnt how to accept differences and how to love everyone. She will miss all her friends from day care and the ones that are moving onto our local School were very excited when I told them that Jazmin will also be going there one afternoon a week. They are all hoping she will be in their class.

 

DONATIONS

 

ANONYMOUS  • GAVE $35006 MAR 2017  With love from the Dragons Angels

JAZZIE*    06 MAR 2017Sincere and heartfelt thanks to all the beautiful ladies involved with the QLD Dragon Angels. It is an honor to be associated with such a wonderful group of people. Your continued support and generous donation is once again extremely appreciated. Thank you for kicking off this years fund raising. With much love Darilyn, John, Callum, Rhiane & mostly love from Jazzie* XXXXX

DONATIONS

ALICE • GAVE $5    31 JUL 2017Xoxo

JAZZIE* 31 JUL 2017Thank you so much Alice XX you're such a sweetie

 

REPOST#13 JAZZIE* (JEANS FOR GENES )04 AUG 2016

Sunday 28th Mar

5TH Peto School July 1995 It was decided that Jazmin had to stay in the baby group again which meant I had to palm Callum off onto one of the dad’s 3 hours every day. Luckily, he is accepting of Jazmin’s needs and happily went to the park with his packed backpack. I made an adventure of his “play dates” and we walked down to the shops every afternoon to pick a special treat to pack for the next day. Both kids missed their daddy heaps and could not wait till Friday afternoons when we headed home for 2 days. Jazmin was disturbed that he was not around, and her routine was way off, poor darling. The 3-rd. week both kids came down sick. Jazmin thou sick was doing great and her determination continually amazed me. She stayed in position, once placed, on the chair, table, and floor for increasing lengths of time. She still could not roll, crawl, see, talk or pull herself up into position but once placed she could now stay for up to 4 minutes.

 

John came down to Brisbane, using yet another sickie. Since our wedding, every sickie he has had has been because of Jazmin, good thing he loves her so much. You must remember that there was no parental leave for parents with sick children back in 1995, just like there was no careers allowance or funding for any of the special equipment that she required. He drove down to take me to Brisbane Women’s and Children’s Hospital for the necessary CVS testing on baby number 3; however they weren’t able to do the testing as the baby was still too small and it was positioned in front of the placenta. The same thing happened when I was pregnant with Callum......ground hog day. A shitty day got even shittier when we found out his place of work went into voluntary liquidation and he was now unemployed.

 

Jazmin, 5 YEARS 9 MONTHS, unfortunately didn’t bounce back after the school had finished and she continued to lose weight. I was beginning to think she was going to give up on life. Little Laura went last year and at this school we found out that little Felicity had also gone. I hope and pray that they are in a better place and that they are healthy and happy and enjoying their new lives.

 

Even though Jazmin hadn’t bounced back after the last ( 5TH) Peto School she continued to go everywhere and do everything (not really as in reality she could do nothing). For FATHER’S DAY 1995 she made John, with a lot of help, a plate and it still holds pride of place in the display cabinet, along with loads of other irreplaceable treasures and precious mementoes.

 

Jazmin’s 6TH BIRTHDAY 27th October 1995 saw her the skinniest and sickest she had ever been. While her formula still filled, sustained and helped her maintain her weight she wasn’t gaining anything. Skin was hanging off her bottom, she had black rings under her eyes and she looks pathetic, but she is alive and I know she is strong and she’ll pull herself back up. She got a beautiful “Ring a Rosie” doll who sings when you hold her hands and a million other presents. She had a birthday party at school and another party at home.

 

I’ll never know why the last Peto school took so much out of Jazmin. Maybe it was the strange surroundings without her Daddy always present; maybe it was the work was finally just too much for her fragile little body, maybe it was the after affects of being on ventolin yet again or maybe she just didn’t want to go on anymore, like I said I’ll never know.

However we continued doing things “our way” and slowly, very slowly over the next few weeks Jazmin finally started improving. Our way is still the only way as none of the Doctors know what to do with her as none of them expected her to live past 3. Her gorgeous little face begun to fill out once again, she was nowhere near as white and sickly in appearance and her little arms and legs were once again starting to fatten up. I don’t know if anyone else was aware of these improvements, but I certainly was and rejoiced in the fact that once again our precious kissy-face was fighting back.

By the end of November 1995 Jazmin 6 YEARS 1 MONTH still has a long way to go but was blossoming once again.......... and her journey continues.

 

DONATIONS

DRAGONS ANGELS   • GAVE $350     14 NOV 2016  To remember a special girl who has got a beautiful family

JAZZIE* 14 NOV 2016To all the wonderful ladies of the QLD Dragon Angels, Thank you for your continued support of Jeans 4 Genes thru JazzieStar Foundation. Your donation is greatly appreciated. Darilyn & John XXXX

BEC & DAN SORIC   • GAVE $21    06 AUG 2016   Love to you all xx

JAZZIE*    08 AUG 2016  Thanks muchly Bec & Dan XX 

JEANETTE PARKER   • GAVE $20    06 AUG 2016  Wonderful work you are doing

JAZZIE*    06 AUG 2016  Thanks so muchly Jeanette, your donation is greatly appreciated X 

AUNTY BRENDA, UNCLE COLIN, HAYLEY & JOXER   • GAVE $52.50   05 AUG 2016   For Jazzie*

JAZZIE*    05 AUG 2016  Thanks muchly muchly. I <3>

REPOST # 12 JAZZIE* (JEANS FOR GENES ) 27 JUL 2016

Sunday 28th Mar

January 1995 saw Jazmin 5 YEARS 3 MONTHS attend her 4TH PETO CONDUCTIVE EDUCATION SCHOOL with the conductors from the Peto Institute in Hungary. She had Elizabeth from school 2 again which is nice. Like usual I find the first week stressful, emotional, and disheartening. Jazmin got 3 new kids in her group: she is the eldest and the least capable. I’m ecstatic to say however that her leg control is better than I thought, and it continues to improve daily. The second week started better, and I was in tears as she SAT ON THE BLOCK FOR 3 ½ MINUTES – yes of course we positioned her there and she was leaning on the chair behind her but so what she did it!!! Elizabeth was so pleased with her progress she advanced her to STANDING EXERCISES were all I do is hold her shoulders, yes we positioned her there first. Notice the beaut brand new AFO’S (in the photos and which QLD health refused to make this way) from the Peto Institute, Hungary that she is wearing. Yes they have a sole and 3 not 2 straps and YES they work. They were made from the measurements taken last school and Elizabeth brought them over for Jazmin this school and she showed improvement immediately. Yes! Immediately.

 

February 1995 and it’s time to go back to preschool, 5 YEARS 4 MONTHS, the official aide time hasn’t come through but it looks like Jazmin will probably only get enough aide time for 5 hours weekly. We have been told to increase her hours to start preparing her for school because even though she is terminally ill “vegetable” she legally has to do Grade 1 the following year when she turns 7. Unbelievable as it is children are not allowed to repeat preschool even if they are disabled. We have been ordered by the QLD Department of Education to increase her hours but not given the aide time needed to increase her hours....... So I’m kind of stuck in the middle again.

 

March 1995 saw Callum turn 1, where did the last year go? It’s still really hard watching him doing normal things that Jazmin 5 YEARS 5 MONTHS can’t do. He’s really good with her now and he never hurts her but gently massages her head and fingers and toes and sits and pats her, it’s so cute. If I ask him to give something to Jazzie he will go and put something in her hand or occasionally drop it on her tummy, never her head......

He’s a great big little bro...................

 

DONATIONS

A CRAW  • GAVE $10.50    28 JUL 2016  💕

JAZZIE*    31 JUL 2016 Thank you, your donation is greatly appreciated X

MAGGIE JOEL  • GAVE $25    28 JUL 2016  <3>

JAZZIE*    28 JUL 2016  Thanks muchly Maggie <3>

 

REPOST #11 JAZZIE* (JEANS FOR GENES ) 17 JUL 2016

Sunday 28th Mar

Our handsome little boy CALLUM entered the world March 1994. When introduced to his big sister Jazmin, (4 YEARS 5 MONTHS) she made little comment, but I know that she is excited about the arrival of her little brother. I began giving Jazmin bottles of breast milk as soon as Callum was born, and I only wish I could have kept it up forever as there was a noticeable improvement in her health. I did try every kind of formula I could get my hands on, from no fat, no gluten, no protein, no taste, muscle builder, bulk builder, you name it Jazmin tried it. We, with the help of the pharmacist, worked our way one by one through every formula she could get her hands on until we finally found one Jazmin liked. I really don’t think anyone, but the GP believed that Jazmin could no longer bite or chew her food and had trouble just swallowing.

 

On 6/6/1994 (4 YEARS 8 MONTHS) Jazmin saw Dr G at the Pediatric Low Vision Clinic in Brisbane. Everyone had been commenting on an obvious improvement with her vision, so her Vision teacher made an appointment for her to be reassessed by the therapists. After seeing her they said that they could do nothing for her at their school for the blind / disabled and recommended I continue doing what I’m doing as it is working. Imagine the school for the disabled blind child telling me they could do nothing for Jazmin. Why was I not surprised? She was then seen by Dr G, I asked for a new script as her glasses were too small for her. He didn’t see the point but finally tested her saying that the script was unchanged, but on checking I found it had gone from 9 to 8.75, it might only be a small change, but it is a change. We left once again without her being tested wearing her glasses, so I still don’t know what difference they make to her vision when she is wearing them.

 

The ladies from the Lionesss Club came to the rescue once again and contributed towards Jazmin’s third Peto School. While we have been raising money for Peto school 3, I keep hearing comments like, “Is it worth it, why do you pay so much for Jazmin’s schooling” etc. If it takes a million dollars to get our little precious better, it will be worth it. I’ve said it before; I’ll sell the house if I have too. I honestly don’t think people realize just how hard Jazmin’s illness affects us financially, emotionally and physically in everyday life. Is it all worth it? YES!!! I believe it is, for if we hadn’t started Peto when we did I doubt that Jazmin would still be with us. So, anything that prolongs her life is certainly worth it and hopefully one day they’ll find a cure. The Doctors have very little contact with her, and it still amazes me that they care so little for a child that has such a rare and unusual disease, even tho no-one is 100% sure of what she actually has.

REPOST #10 JAZZIE* (JEANS FOR GENES ) 23 AUG 2015

Sunday 28th Mar

A huge thank you to all who generously donated through the link Jazie Star Foundation ( Jeans for Genes 2015). We raised just over $700 on this page this year plus another $200 through selling the official merchandise. This page remains up and running for 7 years so donations can be made at any time but I will add to her story around Jeans for Genes every year.

All money goes directly to Childrens medical Research in the hope of finding cures for rare genetic diseases. Once again thank you, your donations are greatly appreciated. XXXX

REPOST #9 JAZZIE* (JEANS FOR GENES ) 05 AUG 2015

Sunday 28th Mar

Jazmin’s 4TH BIRTHDAY, 27/10/1993 saw her happy and content. She had two parties and celebrated all day long!! 2 parties’ means 2 cakes and they were both big number 4’s. The one for day care was covered with smarties and the one for home was covered in 100’s and 1,000’s and like always her candles were sparklers in the hope that she could see them. Unfortunately, she can’t and doesn’t want to eat cake, but all her friends loved it.

 

The round of Christmas parties begun, and we were kept remarkably busy. Jazmin 4 YEARS 2 MONTHS had been making beautiful presents at Kindy /day care and Special Ed for everybody. Christmas and New Year were fabulous. John’s brother from WA, Jazmin’s Uncle Nick came for a holiday at our place. We did not tell anyone he was coming so it was a really big surprise when he walked down the stairs and said, “Hello Everyone”. Aunty Helen and Aunty Sue and their families also came to party with us in Queensland for JAZMIN’S 5Th CHRISTMAS. We spent lazy days by and of course in the swimming pool. We spent days down by the river soaking up the festive sunshine. We spent days at the grandparent’s house being spoilt with tempting tasty Russian food treats and then we spent Christmas day at our place. Jazmin was the center of attention and they all noticed the difference in her from the last time they had seen her till now. The festivities were endless, but it was exactly what we needed after the stressful year we’d just endured. It also gave me a chance to relax before the next round of Peto which was due to begin 31st December. I do not know how I’m going to cope crawling around the floor exercising her when I’ll be 7 months pregnant.

 

Once again, the Lioness Club of Lake Currimundi-Kawana provided the main sponsorship so Jazmin could attend the 2nd Peto School. It was with very mixed feelings that I drove to the first day of this second school. A large part of me was extremely hopeful for her to achieve and progress further but another part of me was just plain scared stiff that she was capable of no further improvement and how she was now was how she’d stay. I was of course also nervous, scared and just simply terrified that none of us; Jazmin the baby or I would cope with all the emotional bombardments that we would be hit with over the coming six weeks.

DONATIONS

JEANETTE PARKER  • GAVE $50   05 AUG 2015

JAZZIE* 05 AUG 2015  Thanks so muchly Jeanette.. Your donation is greatly appreciated XXXX

SHARON DAGOSTINO   • GAVE $21  05 AUG 2015   For Jazzie

JAZZIE*   05 AUG 2015  Thanks Sharon XXXX Your donation is greatly appreciated

UNCLE BRUCE & AUNTY HELEN   • GAVE $52.50   05 AUG 2015   Forever in our heart

JAZZIE*  05 AUG 2015  Thanks muchly Helen & Bruce <3>

ANONYMOUS   • GAVE $20   07 AUG 2015

JAZZIE* 08 AUG 2015  Thank you XX

AUNTY BRENDA, UNCLE COLIN, HAYLEY & JOXER ❌❌❌️   • GAVE $52.50   07 AUG 2015

To Jazzie* with much love

JAZZIE* 07 AUG 2015  Thanks muchly Brenda, Colin, Hayley XXX and woof to Joxer

 SHAZ  • GAVE $10.50  06 AUG 2015  For my beautiful friends in memory of their darling daughter and sister

JAZZIE* 07 AUG 2015  Thanks muchly Shazz XXXX

 

REPOST #8 JAZZIE* (JEANS FOR GENES ) 30 JUL 2015

Sunday 28th Mar

Our Unique Association arranged to bring conductors from the Peto Conductive Education Institute in Hungary to Caboolture for a 6 week intensive school (Jazmin’s not strong enough to travel to Hungary). I wrote to a lot of organizations requesting financial assistance and her main sponsorship came from the amazing ladies of the Lioness Club of Lake Currimundi-Kawana. Conductive Educations aim is to regain motor control through creating new neural pathways. Two weeks before the school was to start, we were notified that the Institute had refused Jazmin’s admittance to the programme; this after already being told that she had been accepted, because of her fitting and because no-one knows what is wrong with her. Regardless of this we went to the assessment appointment and we must have made an impression (through a lot of ranting, raving, bawling and begging) as we were told that even though they didn’t think they should take Jazmin, John and I were so determined to do everything possible for our little precious that they thought they should at least let us try. Needless to say we were extremely excited and I admit I bawled my eyes out the entire drive home. Every time I turned around to smile at Jazmin I saw a beautiful rainbow through the back window, again. It’s amazing how they come into view just when I need them to remind me all is beautiful in this world.

 

Two days later the programme begun and Jazmin ( 3 YEARS 8 MONTHS 10.4 kgs) was in the baby class with three other little girls, Laura, Felicity and Marlena. The girls were all upset that first morning and it was obvious that the next six weeks were going to be extremely hard and very emotional on all of us. On day 3 Krisztina (conductor) pressed on nerve reflexes in Jazmin’s legs and Jazmin lifted her leg by herself in a stepping motion and with our assistance, we were holding her up, she took HER VERY FIRST STEP IN OVER 18 MONTHS. I and all the other mums cried in disbelief. It’s amazing how different it is to be crying tears of joy after crying so many tears in despair, anger, hurt and grief. The next day Krisztina said Jazmin would be sure to surprise everyone more before the programme was finished as she had already done what no-one had expected. Her progress continued and on day 6 Jazmin took 40 yes that’s right 40 STEPS with her little legs across the room and back again. We of course were still holding up her body. We all cried as we counted them out aloud. As I’m sitting here, over 20 years later, I’m bawling my eyes out as I can see it as if it happened only yesterday. She continued to improve in her general health and ability. I can see the improvement in her but can Jazmin feel the greatness she has achieved, I certainly hope so because we are so very proud of our precious little kissy face. On day 27 we had it confirmed by ultra scan that I’m 8 weeks pregnant and now I have to wait till I’m 11 weeks for the CVS testing to see if the baby’s AOK or if it has inherited the same disease as Jazmin. The last day of the programme came around way to quickly and even though I’m glad I don’t have to drive back to Caboolture anytime soon (stress related all day morning sickness didn’t help matters) I’m really sad that it’s all over. Krisztina is now glad that despite their apprehension they allowed Jazmin to attend the school. It was a stressful six weeks but certainly worthwhile. Now that she has taken the first huge step forward hopefully in time the rest will follow and our little precious will beat this disease. The programme was definitely worthwhile and the best thing is that there is the chance of another school in January............ Jazmin’s journey continues

REPOST #7 JAZZIE* (JEANS FOR GENES ) 23 JUL 2015

Sunday 28th Mar

Jazmin 3 years 4 months (10kgs) is still fitting daily and totally unable to do anything for herself yet she seems happy and relatively content, especially when she is at day-care. She absolutely loves interacting with the normal children and hearing their happy laughter and she loves being included in all of their activities. They also do a lot of special activities aimed at stimulating Jazmin’s senses which the “normal” kids love to participate in. It is such a joy to see how she is so totally accepted by all her classmates; they are all so innocent and without prejudice. I hope their experience with Jazmin leads them to being accepting adults when they mature. They all adore her and will do anything for her and I only wish she was able to attend more than the three hours weekly (especially as I have to pay for a whole day but she is only allowed to attend for the hours the government pays her aide time).

REPOST #6 JAZZIE* (JEANS FOR GENES ) 30 MAY 2015

Sunday 28th Mar

Since Jeans4 Genes is nearly upon us for 2015 I've decided to share more of Jazzie* story (my book is coming along slowly but surely) ..............

 

 

Jazmin, 2 YEARS 10 MONTHS, started day-care, 19/8/1992, and was an instant hit with all the children. It took us a long time to arrange and then an even longer time for all the authorities to agree on who/what had to attend with her. I believe it will do her the world of good to be interacting with “normal” children and hearing them laughing as they play. Being with special children all the time has limited her experiences of the other side of life and I think participating in normal things will do her more good than any medicine the doctors could prescribe for her. She has started at 3 hours weekly (I have to pay for a full day) and hopefully this time will increase. I think they agreed to this time as they are classing it as respite care for her mummy’s sanity. They believe I need time out and I must admit it is a lot easier doing the food shopping without her now that she can’t sit up in the trolley. It’s the little things in life that make all the difference. Val (her personal aide) and all the staff and children fell in love with Jazmin instantly and Jazmin adores them all and lets them do just about anything to her.

 

Jazmin (nearly 3 years old) has been known to wake every hour on the hour for weeks on end and the only thing to do, while trying helplessly to soothe her, is to try and work out why my precious is being punished and tormented with so much pain. A pain that we are unable to soothe as she cannot verbally tell as where it hurts. A pain that we are unable to soothe as she can't physically show us where it hurts. A pain that we are unable to fix as everything they give her makes her sicker. Even though they now have her on medication for her stomach she still prefers sleeping up right on my chest. Needless to say, the more I sit and think about it the worse I become physically, mentally and emotionally. I average about 3 hours sleep most days. I find it harder to cope with than John although we both love her immensely, as I spend most of the time with her when things are at their worst. Night times it’s usually me because he has to go to work every day to support us ( there wasn’t very much financial assistance for sick children back then also no baby bonus or paid maternity leave or parental leave) . There have been a few occasions when fists have gone through walls in intense frustration, anger, grief, and despair. Therapy sessions and doctor appointments are now usually just me and I’m finding it increasingly difficult to sit through all the questions and torture as they continually push her little body beyond its limits. Every appointment it is the same endless list of questions with the same painful answers but to no avail as nothing ever comes of it, nothing is ever suggested, nothing is ever tested, nothing is ever achieved. I really don't think they believe what I tell them but surely, they can see with their own eyes that this precious little bundle is slowly deteriorating right before us.

 

 

 

 

DONATIONS

 

DRAGONS ANGELS • GAVE $400   31 MAY 2015 For *Jazzie who we never got to meet and to support her beautiful Mum and Sister.

JAZZIE* Thanking the beautiful Dragon Angels from the bottom of our hearts for their amazing donation towards Jazzie* ( JazzieStar Foundation) and Jeans for Genes Research. So proud to belong to such a wonderful group of women. Greatly appreciated XXXXX

 

WENDY • GAVE $105  30 MAY 2015  bless you all

REPOST #5 JAZZIE* (JEANS FOR GENES ) 29 JUL 2014

Sunday 28th Mar

Six weeks after the blood and skin samples were taken the pediatrician phoned saying that they THINK they have found out what is POSSIBLY wrong with Jazmin BUT no one in Australia has ever heard of it and he recommends I make an appointment with Jazmin’s neurologist. It was two weeks before he could see us and on entering he handed me a textbook and said “read that (very small) paragraph” ..... INFANTILE REFSUM’S DISEASE is a recessive hereditary disease in which the body doesn’t break down fats and phytanic acid builds up in the body DISTORTING CELL MEMBRANES CAUSING IRREPAIRABLE NERVE DEGENERATION. DEATH usually occurs due to CARDIAC and RESPIRATORY FAILURE. There is NO CURE. He, the specialist, can’t tell us anything as he has never heard of it before and after about 5 minutes, he directed us to the hospital’s dietician. The diet we were given was STRICTLY NO FAT, LOW PHYTANTIC ACID forwarded from London. Jazmin’s ACID LEVEL was now 180 TIMES NORMAL.

 

So at 2 YEARS 2 MONTHS 2 WEEKS Jazmin finally got a diagnosis (of sorts!) ..... they think she possibly has INFANTILE REFSUM’S DISEASE.

 

Good thing they took 2 skin biopsies because the results were so unusual, they think they made a mistake and are now testing the second sample. The second test had the same unusual results.... BLOOD TESTS SHOW THE DISEASE..... SKIN BIOPSY DOES NOT SHOW THE DISEASE.

 

They now believe Jazmin has A NEW VARIENT OF INFANTILE REFSUM’S DISEASE or A TOTALLY NEW DISEASE.

 

You would think the medical profession would be extremely interested in a NEW DISEASE, but no-one is. I must have blocked out who told us, as it’s too painful, but I remember being told to TAKE HER HOME AND LOVE HER AS SHE’LL BE DEAD SOON.

 

As you can see by the photos she is just like other little girls.(1) Always happy and smiling (2) No she’s not a messy eater she’s doing finger painting with spaghetti. Anything that’s different/sensory she plays with (3) using a box of balls for support to sit up to play (4) Happily playing with her dolly...... While her leg use continues to worsen she still has full use of her hands THANK GOD!...

Life continues to be experienced one day at a time...............

 

DONATIONS

BRENDA, COLIN, HAYLEY & JOXER • GAVE $50   01 AUG 2014  For Jazzie* with love 

JAZZIE* Thanks so very muchly <3>

HENRY • GAVE $15.75    01 AUG 2014    Story brought a tear to my eye, thanks for sharing.

JAZZIE* Thanks so very much for your kind donation....... the story continues and hopefully I'll find the strength ( and a publisher) to get it finished x

ASH • GAVE $10.50   01 AUG 2014xox

JAZZIE*Thanks so very much Ash xo

AUNTY HELEN • GAVE $52.50   02 AUG 2014   Always in our hearts #Jazziechook x

JAZZIE* Thanks heaps XO <3>

TRISH• GAVE $31.50   05 AUG 2014

JAZZIE*Thanks so muchly Trish xo

LAUREN FOOTE • GAVE $10.50    07 AUG 2014   Thinking of Jazzie :)

JAZZIE* Thanks muchly my dragon daughter xo

ANONYMOUS • GAVE $108    12 SEP 2014   Love you Darilyn xxx

JAZZIE*Thank you so muchly xoxoxoxoxox so appreciated xx

GLEN • GAVE $21    03 NOV 2014 Dear Darilyn - your story has touched me and I wish you continued peace, strength and happiness.

JAZZIE* Thanks so very much Glen for your kind donation... x

REPOST #4 JAZZIE* (JEANS FOR GENES ) 9 JUL 2014

Sunday 28th Mar

Jazmin's health continued to go downhill but whatever life threw at her she remained a totally adorable little girl with a remarkable ability to light up the room with her amazing smile. Her life was full of Doctors, Specialists and Therapists appointments but we still found time for normal experiences like parties, camping, holidays, and swimming.

17 MONTHS - therapists demand, that I have her hearing tested. Their reasoning being that when I call Jazmin’s name she does not turn and look directly at me-- and that just is not socially acceptable. The kid can hardly see and it’s of little importance to her, but the sound of my voice is probably the most important and consent thing in her life.


22 MONTHS - she went 24 hours without eating or drinking and was quickly dehydrating. We took her up to the hospital and they tried unsuccessfully 3 times to insert a drip before admitting her to isolation for observation. Once we got home, she was very weak for a long time and it was the first-time other people could see a definite decline not only in her health but also in her physical ability. Later that month we attended a vision seminar in Sydney hosted by the Royal Blind Society. We saw the therapists and she was the first and only person ever to say to me, “YOUR DAUGHTER IS LEGALLY BLIND”.

23 MONTHS - I’ve just been at the pediatricians again. Why isn’t he more concerned that this beautiful (and yes she is very beautiful) little girl who is nearly 2 still can’t roll, crawl, sit, walk or talk? He keeps telling me there is nothing wrong with her except delayed development due to her poor vision. He did agree to do tests to see if she has a metabolic problem which is preventing her from gaining weight.


NEARLY 2 - we still have no definite explanation as to why her health and ability is slowly continuing to decline. She still has full use of her hands but her leg strength and ability is definitely worsening (she uses a standing frame when playing to support her body) The nights are pretty horrific as she wakes heaps and I spend night after night with her positioned upright on my chest as this seems to be the only position she sleeps in painlessly and contently.

2nd BIRTHDAY – We packed up and headed south for a family holiday and after visiting John’s family in Orange we went to Sydney were we celebrated Jazmin’s 2nd birthday and her cousin Hayley’s 5th birthday with my family. While we were in Sydney Jazmin was assessed by the Royal Blind Society. They, after hours of testing, believe that she has LIGHT PERCEPTION WITH PROJECTION, which means she can see the light source and she knows where it is coming from. ( thank God, what a relief to know she’s not in total darkness) They also say that all her physical disabilities are in no way connected to her hereditary eye condition LEBERS CONGENITAL AMAUROUSIS . At last, someone has agreed with us that all her problems are not because of her visual impairment.


25 MONTHS - The blood tests that were done weeks ago have come back and they show an INBALANCE IN CHEMICAL LEVELS and that FATTY ACID LEVELS ARE 8 TIMES NORMAL. I can’t believe it, 8 times normal why hasn’t this been picked up on the earlier tests? These results lead them to believe she has a METABOLIC DISSORDER. They didn’t suggest any changes to her diet etc. I was told to take her for specialized blood tests in Brisbane. We have to wait nearly a month before she can be seen by a particular pathologist. Surely if it was important, they’d admit her to hospital immediately and do the testing there. Wouldn’t they? Every time I go somewhere with her I expect them to say let’s admit her to hospital and do every test imaginable and finally work out what this little precious has wrong with her, but they never do.

26 MONTHS - We went down to Brisbane to see the pathologist and blood samples and 2 skin biopsy were taken to be sent to Adelaide’s Women and Children’s Hospital for further testing...................Wonder how long before we get the results?

DONATIONS

BROOKE LIGHTBODY  • GAVE $31.50  09 JUL 2014  For my strong little cousin Jazzie

JAZZIE* 10 JUL 2014  Thanks Brooke <3>

SHAZ• GAVE $5.25  10 JUL 2014In memory of your precious angel.

JAZZIE* Thanks so much Shazz XO

MARYLOU GEORE • GAVE $105   11 JUL 2014God Bless our lil Angel Jazzie

JAZZIE*Thanks Marylou <3>

VESNA• GAVE $31.50   14 JUL 2014For Jazzie

JAZZIE* Thanks Vesna <3>

NICK AND VERNEICE GRYGORUK• GAVE $50   17 JUL 2014 Love ya Jazzie

JAZZIE* Thanks Nick and Verneice, your donation is greatly appreciated <3>

MABEL MCGUIRE • GAVE $10.50   25 JUL 2014Thank u for sharing your story Darilyn!!

JAZZIE* Thanks Maz <3>

REPOST #3 JAZZIE* (JEANS FOR GENES ) 05 JUL 2014

Sunday 28th Mar

Life was fantastic and over the coming months Jazmin met milestones like every other baby . She could pass toys from one hand to another, roll from side to side, front to back and back to front, and she was making many varied sounds. She was a very happy baby and everyone loved and adored her.


At 5 ½ MONTHS Jazmin was referred to Dr G to see about correcting her turned eye -no big deal. At her second appointment he said she was long sighted and gave me a script for glasses. I was absolutely devastated to think that my little precious needed glasses; there had been no indication from the hospital at birth or her check up that her sight was involved as well as the turn.


By 6 MONTHS she could walk in the walker, she could sit when placed in position and happily play with her toys. She would stand and take little steps when held by her hands. She could feed herself and she was trying really hard to crawl. She was a delightful, always smiling, happy little girl.

At 7 MONTHS the eye specialist tried patching one eye at a time to see if that would help strengthen the muscles. Once she started wearing the glasses, she ceased rolling, I assumed the frames were sticking into the side of her head and hurting. ........... The Doctors all said that there was nothing to worry about.


At 8 MONTHS she had begun to roll again even while wearing her glasses. Dr G is off to London for 6 months exchange so he has arranged for her to see Dr S in Brisbane, he is the top children’s eye surgeon, and he would be the one doing her corrective surgery. Dr S did heaps of testing then asked as to make another appointment for 6 weeks’ time. As we were walking out of the door he said, “Actually you’d better book her in for more test now, do you know where St Andrew’s Hospital is, I don’t think she can see much”. ............. Totally speechless even now about how he told us.
We found our way to the hospital, booked her in then headed home............. What a stressful drive that turned out to be. 2 weeks later we were back in Brisbane and Jazmin had wires stuck all over her and was bombarded with test after test for hours and hours. They never fully explained her results...... Because they obviously never understood what her results were. We were always told everything is OK considering her vision problem BUT NO-ONE would tell us what the problem was.


9 MONTHS old and Jazmin is extremely cute and chubby and does remarkably well when wearing her glasses. To this day we have not seen her crash into anything while rolling around on the floor or walking in her walker. I refused to throw away her glasses as Dr S suggested and she continued to wear them. I believe if they made no difference Jazmin would have taken them off and thrown them away herself.

 

REPOST #2 … JAZZIE* (JEANS FOR GENES) 04 JUL 2014

Sunday 28th Mar

The first 4 hours of Jazmin’s life were spent in a humidicrib. She was covered in huge bruises but despite the black and purple patches she was totally adorable. Then for the next 11 days she was kept in the nursery and I was in the room furthest away from the nursery. They would never explain WHY she couldn’t be in with me. I was only allowed in the nursery to feed and bath her so that the “sick” babies would not be disturbed. She was going great until she became jaundiced and had to spend days 5,6 & 7 under phototherapy lights. By day 7 she was all pink and rosy and GREAT we can finally go home! NO! she had lost 1 whole pound in the week since birth and at only 5lb 4oz they were not going to let us home until she regained some of the lost weight. They forced feed her through a tube until finally on day 11 they were happy with her small weight gain and discharged us from the hospital. Throughout these 11 days I had not once been allowed to do anything apart from feed and bath her. I had not once been allowed to just stay in the nursery and watch her in case I disturbed the “sick” babies. Jazmin was not sick so WHY couldn’t I stay with her, WHY couldn’t she be in my room. Every other Mum had their babies in with them and when the “sick” babies’ parents came to the hospital they were allowed to sit and hold their babies for as long as they liked……… What weren't they telling us?

DONATIONS

JAI, REBECCA & MIA • GAVE $31.50  04 JUL 2014   Always loved and part of our great family Jazzie. xx

JAZZIE* Thanks so much <3>

LYNDA NEWTON • GAVE $10.50  04 JUL 2014   It's only little but I care.

JAZZIE* Thank you so much Lynda <3>

MANI  • GAVE $10  04 JUL 2014  xoxoxo

JAZZIE* 04 JUL 2014  Thanks Mani <3>

MAGGIE  • GAVE $20  03 JUL 2014 <3>

JAZZIE* 04 JUL 2014  Thanks Maggie <3>

 

REPOST #1 …. JAZZIE* (JEANS FOR GENES) 03 JUL 2014

Sunday 28th Mar

I've started writing a book about Jazzie* and am going to share a little every day up till
Jeans for Genes Day....
Starting at the beginning .....
At about 12.40 p.m. a very bored looking nurse poked her head around the doorway to see if I was all right. She didn’t believe me when I said the baby was getting very close now and she commented, “There’s no way you could be having it yet”, luckily another nurse stuck her head in and said, “We’d better look anyway” and about 2 seconds later she was telling the nurse to get the doctor, quickly! As the doctor was getting tied into his greens our little one’s bottom pushed its way painfully into this world. As the 2 doctors, 3 nurses and 2 visiting interns watched (none of them had been present at a natural breech delivery and I think that is the only reason I was not C-sectioned), its legs, arms and body were literally pulled out of me, the umbilical cord was unwound from around its neck. I asked John if it was a boy or a girl but he couldn’t see through all the medical staff and a very bored sounding nurse said, “It’s a girl”, as at 12.47 p.m. (daylight saving time) Friday 27 th October 1989 our beautiful adorable tiny little precious princess JAZMIN ALISE GRYGORUK was delivered into our lives. From this moment on she was the most important person in the world to me.

The small (6 lbs 4 oz 19 ¾ inch ) white bundle that was our first born daughter, was quickly whisked across the room to a table and the entire “medical team” followed her over to the table. It probably was not long but it seemed like an eternity before they were finished doing whatever they were doing. I think I held my breath the entire time because at this stage I still did not know if she was alright, I did not even know if she was alive as I had not heard her make any sound not even a little whimper. Her first photo shows a mask over her face, but we were not told if she was resuscitated or just given oxygen, she looked a pathetic sight. She had little colour, apart from the huge purple bruises which were covering a large portion of her tiny body, and her little chest was very sunken. I can only pray Jazmin has not suffered from lack of oxygen during her traumatic birth.

 

DONATIONS

ABBY   • GAVE $5  03 JUL 2014  <3

JAZZIE*  05 JUL 2014  Thanks Abby <3 XO

Jazzie* little sis Blaze started the original In Memory page July 2014

Wednesday 24th Mar

BLAZE • GAVE $10.50   03 JUL 2014   <3

JAZZIE*   awhhh Thanks little sis Love you muchly muchly little big sis Jazzie* XOXOXOXOX

 

 

Thank you to my Sponsors

$101.27

Mummy & Daddy Xxxx

Our beautiful kissyface princess Jazzie* We love you today and everyday forever and always XXXX

$156.60

Dragons Supporters Club Qld Inc

To remember Jazzie beautiful daughter of our good friends and club sponsors. xx

$99.18

Anonymous

$25

Rhiane Grygoruk

$101.27

Darilyn L Grygoruk

JazziwStar ...Always and forever our sneaky cheeky kissy face &lt;3 XXXX

$350

Dragons Supporters Club Qld Inc

To support our beautiful friends and remember their darling daughter

$5.04k

Raised From Edh