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.
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. So it's the most efficient way to donate - saving time and cutting costs for the charity.