Interview with – Mark, Mollie’s dad. Living with Rett syndrome
Written By – Sarah Moss
Mollie has Rett syndrome, a rare and severe neurological disorder. Although there is currently no cure, clinical trials have begun, offering renewed hope to families.
As a baby, Mollie developed normally until around her first birthday. By 15 months, her parents, Mark and Claire, became deeply concerned when she stopped meeting milestones and began losing abilities, such as sitting and playing with toys, and using her hands. Three months later, genetic testing revealed the devastating news that Mollie has Rett syndrome.
Rett syndrome is caused by changes in the MECP2 gene. Girls like Mollie seem to develop normally at first, but symptoms slowly appear, making movement and communication harder. Some have seizures, and many need constant care.
Mark shares, “I’ve never heard Mollie say daddy, never seen her walk. We’re blessed that she has a younger sister, but it’s heartbreaking to watch one child live the life the other should have too.”
Hope in research
The family has found hope in news about gene therapy. Through funding pioneering work that offered initial proof that gene therapy could treat, or possibly cure, Rett syndrome, children’s charity Action Medical Research has helped pave the way to exciting progress now being made. Clinical trials are underway, and the possibility of transformative treatment feels closer than ever.
Girls like Mollie seem to develop normally at first, but symptoms slowly appear
Cycling for change
This vital research to help children like Mollie is only possible with support. Through their programme of bike rides, Action Medical Research have built a community of active givers, including biotech professionals. By partnering with EBD Group, the charity benefits from key life-science events, such as BIO-Europe, where initiatives like BiotechBikers help power research through connections. These partnerships enable Action Medical Research to continue fighting rare diseases to change the lives of children like Mollie.
Mark says, “If Mollie could regain basic skills, it would be tremendous. We’re so close, but time is passing. This condition has already taken so much from her. Many families have waited longer than us and sadly, some children have been lost along the way. Change is now within reach.”
Join the fight and help children like Mollie action.org.uk/mollie
Paid for by EBD Group
