AN inspirational three-year-old from Catbrook has completed a month of walks around his home village, raising over £4,500 for research into Angelman Syndrome.
Ivor Washbrook was diagnosed with the rare neurological condition just before Christmas last year. To increase awareness of Angelman Syndrome and raise money for FAST (Foundation for Angelman Syndrome Therapeutics) he has walked a 1km lap of Catbrook for 31 days in a row.
The community came out in force on Sunday morning (16 July) to cheer Ivor over the line on his final walk. Among those joining him were David Davies MP and local councillor Richard John.
Angelman Syndrome affects about 1 in 15,000 people, causing delayed development, severe learning difficulties and issues with movement and balance.
Most people with Angelman Syndrome will never talk and some will never walk. They need continuous care and will never lead independent lives.
But there is hope with the advancement of scientific research. Scientists believe Angelman Syndrome has the potential to be cured and FAST – a not-for-profit organisation that provides funding for UK Angelman Syndrome research – is helping to drive this forward. There are several promising clinical studies and trials worldwide.
Ivor’s parents, Sarah and Andrew Washbrook, said they were “totally blown away” by the kind support of the Catbrook community.
“When I dreamt up this challenge, my main aim was to spread awareness of Angelman Syndrome and to raise funds for FAST UK, to support medical research into Angelman Syndrome. I also wanted people to understand Ivor,” said mum Sarah.
“This has certainly happened! We all now know a bit more and we have raised over £4,500 (and still counting). A huge amount!
“The month of walking has also helped Ivor. His walking has definitely improved and although he can’t talk yet, he has certainly learnt the ability to communicate “another walk, oh you’ve got to be joking!”
“As for us, instead of dwelling on what Ivor can’t do and our grief and worries for the future, it has given us the opportunity to celebrate and be proud of the wonderful person that Ivor is - a loving, happy and determined little boy.
“More than anything I have been amazed at the simple kindness shown to us. From the bottom of my heart, thank you!”
Monmouth MP Mr Davies said: “I know this has been a real challenge for Ivor as he hasn’t long been able to walk any real distance.
“What he has achieved – with a big smile on his face – is remarkable. He is an inspiration to us all. Not only have I learnt about Ivor, I have learnt about Angelman Syndrome.”
Local councillors Richard John and Jayne McKenna added: “Ivor and his family have really brought the community together through their charity efforts in the most wonderful way and it was lovely to see the whole village celebrating Ivor’s achievements as he completed his 31st kilometre.
“Ivor and his family have helped raise awareness of Angelman Syndrome locally as well as raising thousands of pounds for research into this condition. Congratulations Ivor!”
Donations for Ivor’s walks can be made at https://www.justgiving.com/page/sarah-washbrook-1684270030414