Why I’m doing it
Mila is asking for your help
Mila is two months shy from turning four and is definitely not living the life any parent would have anticipated for their child.
Mila was born in September 2017 after a CVS confirming that she’s a healthy child as my husband and I are carriers of MLD a fatal condition that has already claimed Mila’s sister’s life. We were filled with joy as she was beautiful, tiny and strong.
At 4 1/2 months Mila woke up from her midday sleep with a scream and outward spasms that I quickly recorded to show her doctor who referred me to Monash Children’s hospital. EEG results showed a brain on fire which required immediate intervention with high dose steroids. From there we tried loads of meds and diets with no success until we got the diagnosis at age 1 which explained why her epilepsy was so resistant. Grieving the child we thought we had, acting quickly to give Mila seizure break and trying to accept the diagnosis, our world has definitely changed forever.
Mila and all CDKL5 children work really hard on a daily basis doing therapy in all it’s disciplines to counteract the delay the gene causes and the seizure effects.
Gene therapy is a cure not just to get seizure freedom which is amazing on its own but also to give them the chance to develop quicker and for a longer and more quality life.
Help us help our children and find a cure for CDKL5 deficiency disorder.
