Story
Phelan McDermid syndrome is a rare genetic disorder that affects speech, mobility and cognitive development.
Charlie was diagnosed with the condition in 2010.
He is now 8 years old and has never spoken. He has learning difficulties, autistic like behaviour, global developmental delay and will need additional care all of his life.
He attends a local special school and enjoys swimming and his bike.
He tries to communicate via picture exchange.
Charlie and his family are close friends with Emma my dads partner, and I was inspired to raise money because of the complex issues surrounding the syndrome. The fact PMS is so rare means, in my opinion, awareness should be raised as much as possible.
There are only approximately 150 people diagnosed with condition in the UK and 1500 world wide.
Pmsf U.K was set up in 2015 to help put UK families in touch with other local families and to provide a supportive inclusive community for those who have or know someone with PMS.
They provide family days and get-togethers and some limited support for additional therapies for the person with the syndrome.
I will be running the Great North West half marathon on the 19th February, which will be my first. I'm looking forward to the challenge and I hope to do alot more in the future in a bid to raise awareness for a worthy cause.
All donations greatly appreciated,
Ben Edwards.