A year ago, Matt Billingsley’s daughter Edith was diagnosed with Rett Syndrome, a rare genetic condition: ‘To say that this was devastating would of course be a massive understatement,’ Matt says. ‘Her diagnosis completely changed our world. She will have a remarkably different future to the one we had anticipated.’
Babies with Retts are apparantly healthy at birth, but begin to deteriorate before their second
birthday, losing their speech, their mobility and the use of their hands. There is no cure.
Looking for ways in which they might help, Matt, a solicitor in Sturminster Newton, and his wife Louise have been raising funds for Reverse Rett UK. ‘The charity has been – and very much continues to be – an invaluable support for us during this turbulent journey. There is a lot of hope in the Rett community that a cure is on the horizon. Retts Syndrome has already been reversed in the lab, gene therapy trials are ongoing in America, and amazingly they will shortly be starting in the UK! ‘But funding is vital.
‘So with my friend Ash Lock I am embarking on a 100km walk along the spectacular Dorset coast as part of the Jurassic Ultra 2024 event, over the weekend of 18th and 19th May.
‘Being completely honest, neither of us are the most physically imposing of individuals, but we wanted to give everything we have physically and mentally to achieve this for Edith.
With only 48 hours to complete the walk, we will certainly need some motivation to get us around!
‘If any BV readers are able to help, we would love to use our efforts to raise some money for Reverse Rett – who are working tirelessly to support families just like us, and are fighting for our daughter’s future. Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity.
Donate here: bvmag.co.uk/MattBillingsleyWalk
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