Cesar Garcia Torres is fundraising
Raising Our Voice for Valentina: for everyone with Rett
Valentina, our gorgeous baby daughter, will be two in May. In November last year, we learned that she likely had Rett syndrome: after months of concerning signs in her development, followed by more worryingly skill regression, a loss of interest in toys and almost impossible to control hand mouthing. Genetic testing confirmed the diagnosis just before Christmas, a 1 in 10,000 chances of “winning” the worst lottery ever.
Rett syndrome is a rare, severe neurodevelopmental disorder that affects mostly girls. As we began to learn more, we discovered a devastating reality: most children and adults with Rett are unable to speak, walk or use their hands. Breathing difficulties, seizures, feeding tubes, anxiety, gastrointestinal and orthopaedic complications are common. Most people with Rett syndrome are severely disabled and will need round the clock care for life.
You don’t truly understand grief until you hear something like this about your daughter. The place we found ourselves in was dark – filled with sadness, uncertainty and fear. And yet, through it all, Valentina never lost her smile. Her bright, unwavering joy became our anchor and, with the support of our family and friends, eventually brought us back to life.
Her smile gave us the courage to learn everything we could about Rett, so we could do our very best to support our little angel. Through that learning, we discovered Reverse Rett and the extraordinary and inspiring work they support to advance genetic medicines that target the root cause of Rett – most often a mutation on a gene called MECP2 on the X chromosome. For the first time, we encountered real hope: two gene therapy programmes now in the final stage of clinical trials.
Beyond the science, Reverse Rett supported us as a family when we needed it most. Andy and the team were there whenever we needed to talk, offering reassurance, guidance and hope. They provided a much needed sense of community when we felt so isolated, and they connected us with other families walking the same path.
A large part of the strength we have today is thanks to Reverse Rett – and to the hope they helped us find. Hope that Valentina may one day tell us she loves us. Hope that she might walk while holding our hands. Hope that she will not be trapped inside her own body.
We are now on a mission: to raise funds so Reverse Rett can continue their vital work – not just for Valentina and all the diagnosed girls in the UK, but for every family who will receive this diagnosis in the future. Throughout 2026, we will craft, run, sing, walk and write – including developing a fantasy story with Valentina as its hero – to raise funds, awareness and, above all, hope.
Help us make a difference for Valentina, and for every girl diagnosed with Rett syndrome. The science is ready, the momentum is real, the time to act is now. A world where Rett no longer means lifelong suffering is closer than ever – and by acting now, we can help accelerate the progress that families like ours cannot afford to wait for.
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