Every child deserves their first steps, their first words, their first laugh.
But for Adeline and children like her, those joy-filled firsts never came. Instead, she began her life with seizures. Painful seizures and sleepless nights that robbed Adeline of her ability to reach her development milestones.
Adeline has CDKL5 deficiency disorder – a rare and severe genetic condition that disrupts brain development and causes frequent, treatment-resistant epileptic seizures.
“If I could take it all away and give her a healthy life, of course I would,” Anna shares. “But I feel very strongly about her life having meaning beyond her diagnosis.”
Your tax-deductible gift before 30 June could help bring life changing gene therapies to children. Your support could help bring the milestones every child deserved within reach.
But for Adeline and children like her, those joy-filled firsts never came. Instead, she began her life with seizures. Painful seizures and sleepless nights that robbed Adeline of her ability to reach her development milestones.
Adeline has CDKL5 deficiency disorder – a rare and severe genetic condition that disrupts brain development and causes frequent, treatment-resistant epileptic seizures.
“If I could take it all away and give her a healthy life, of course I would,” Anna shares. “But I feel very strongly about her life having meaning beyond her diagnosis.”
Your tax-deductible gift before 30 June could help bring life changing gene therapies to children. Your support could help bring the milestones every child deserved within reach.
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You can help our researchers move a cure closer to the clinic and closer to the lives of children like Adeline
Learn more about the gene therapy research that could help kids like Adeline.
Children’s Medical Research Institute’s Professor Leszek Lisowski believes gene therapy has the potential to change this reality, bringing hope to millions of affected children and their families.
“We now have unprecedented power to diagnose genetic conditions. Unfortunately, while our diagnostic capability has grown exponentially, progress in prevention and treatment has not kept pace,” says Professor Lisowski.
“However, gene therapy has the power to fill the gap that has formed and bring real benefits to patients – especially those with more rare conditions.”
“We want to help people who are being overlooked,” Prof Lisowski said.
“Gene therapy aims to correct genetic mutations, not just treat symptoms. This research would not have progressed without donations from everyday people coming together,” he said.
This research is for families like Anna Pitman’s.
“We now have unprecedented power to diagnose genetic conditions. Unfortunately, while our diagnostic capability has grown exponentially, progress in prevention and treatment has not kept pace,” says Professor Lisowski.
“However, gene therapy has the power to fill the gap that has formed and bring real benefits to patients – especially those with more rare conditions.”
“We want to help people who are being overlooked,” Prof Lisowski said.
“Gene therapy aims to correct genetic mutations, not just treat symptoms. This research would not have progressed without donations from everyday people coming together,” he said.
This research is for families like Anna Pitman’s.
Adeline turns six in June and she has missed almost every single developmental milestone
Your tax-deductible gift before 30 June could help bring life changing gene therapies to children. Your support could help bring the milestones every child deserved within reach.
Together, we can give children the chance to grow up healthy.
Your tax-deductible gift before 30 June could help bring life-changing gene therapies to children. Your support could help bring the milestones every child deserves within reach.
