<div>Help Us Find a Cure for Rett Syndrome
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<div>Allegra will be 13 this October. She loves books, music, animals and, most of all, being with her family. She understands us, knows the people she loves and has a wonderful personality, with so much going on inside her that she cannot tell us.
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<div>Allegra has Rett syndrome, a cruel neurological disorder caused by a mutation in the MECP2 gene. Rett has taken away so much of what should have been possible for her, but perhaps the hardest thing is that it has taken away her ability to communicate her thoughts and feelings. She understands us, but she cannot tell us what she is thinking or how she feels. Allegra is our daughter, but we are also her voice.
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<div>At nearly 13, her contemporaries are starting senior school, becoming more independent, making new friends and experiencing all those exciting teenage firsts. We are incredibly happy for them, but it is heartbreaking knowing how many of those firsts Allegra is missing. Not because she doesn't understand, but because Rett has robbed her of the ability to communicate and do so many of the things other girls her age take for granted.
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<div>Her seizures are thankfully managed with medication, but Rett affects almost every part of her life. We have learned to understand the smallest expressions, movements and reactions, but we desperately want more for her. We want Allegra to have her own voice. We want her to be able to tell us what she wants, what she loves, what she is frightened of and what she dreams about. We want her to have choices, independence and a future.
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<div>One of my greatest fears is what happens if there is no cure. As her mother, I am her voice and her strongest advocate. What happens if one day I am not here? I cannot bear the thought of Allegra still needing someone else to speak for her. I want to know that she will have a future where she can communicate for herself.
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<div>When Allegra was diagnosed, Rett felt like a life sentence. But research has changed the outlook dramatically. Landmark scientific studies have shown that restoring MeCP2 function can reverse the neurological features of Rett in laboratory models. This gave researchers something incredibly important: evidence that the effects of Rett may not be permanent and that a cure could be possible.
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<div>That is why we are fundraising for the Rett Syndrome Research Trust (RSRT). RSRT is focused on finding a cure by developing genetic medicines that target the root cause of Rett, and research is now moving into clinical trials. We aren't fundraising simply to make Rett a little easier to live with. We are fundraising because we believe a cure is possible.
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<div>Our hope is that Allegra will one day be able to communicate her thoughts and feelings, make her own choices and have a future that isn't defined by what Rett has taken away. We know research takes time, but time matters enormously. Allegra is nearly 13. Every breakthrough matters.
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<div>And we don't want to stop with Allegra. We don't want another generation of little girls to be robbed of their voices and their futures by this cruel disease. We want the next family who hears the words “your daughter has Rett syndrome” to be told that there is hope, there is a treatment, and there is a cure.
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<div>Please help us give Allegra back her voice. Please help us find a cure for Rett syndrome.
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<div>Every donation, no matter how large or small, helps support the research that could change Allegra's life and the lives of thousands of other girls and women living with Rett.
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<div>If you can donate, thank you. If you can share Allegra's story, thank you. And if you can do both, you are helping us turn hope into action.
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<div>Follow Allegra's journey on Instagram: @forallegra
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<div>Follow RSRT: @rsrtig
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<div>Julia &amp; Alex
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Kartini Couling

Anonymous

Timothy Freeman

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