Kat Pond
Kat and Bastian's Parallel London 2017 fundraising page
Fundraising for PMSF UK
Story
Thanks for taking the time to visit my JustGiving page.
My son Bastian was born in 2008 and has Phelan McDermid Syndrome (PMS) (aka 22q13 syndrome) a rare chromosome disorder which affects every aspect of his life.
There are very few things Bastian can do independently and he requires constant supervision. He has severe cognitive impairment and significant global delays. He cannot speak and continues to have mobility difficulties, tripping and banging into things. He is unable to walk for very long periods of time and is dependent on a wheelchair when out in the community. He eats food too quickly without chewing and chokes on his food almost daily. He is not toilet trained and needs help to get dressed. He sleeps in a specially made cot bed with a support mattress for his own safety. He needs care for every moment of every day.
Behaviourally, Bastian is a happy, loving, affectionate boy. He rarely gets upset and has a laid-back personality. He loves to have his hand held and to cuddle. He likes to pinch the skin on people's elbows. He often chews and sucks his clothes. He is always smiling and loves to give high fives!
There are just over 130 families who are diagnosed with PMS in the UK & Ireland, and approximately 1500 worldwide. All people with PMS have difficulty communicating, many are non-verbal and most have low tone in their limbs. All people diagnosed with PMS need additional care to support their daily lives.
The Phelan McDermid Syndrome Foundation UK (PMSF UK) is a registered charity in the United Kingdom. PMSF UK is about providing a supportive inclusive community for those who have or know someone with PMS. They can provide family days and some limited support for additional therapies for the person with PMS (two awards given annually).
Parellel London have joined forces with the brilliant ambassador and inclusion and sensory engagement expert Jo Grace to create the UK's first mass-participation Super Sensory 1K! This race encourages participants to exercise their senses over a course comprised of all kinds of sensory experiences from sounds and smells to textures and colours.
I will be pushing Bastian round the course in his wheelchair!.
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