Aylesbury family need your help to improve the quality of life for their son who has extremely rare condition

Stephen and Kristina West with their son Michael, four, who has Phelan-McDermid Syndrome
Stephen and Kristina West with their son Michael, four, who has Phelan-McDermid Syndrome

An Aylesbury family have started a crowdfunding page in an effort to provide a better living environment for their son, who has an extremely rare condition.

Michael West, four, has Phelan-McDermid Syndrome, a condition caused by the loss of a chromosome which leads to developmental delay.

Michael was diagnosed with the condition, which according to the Phelan-McDermid Syndrome Foundation, affects 130 families in the UK and Ireland and 1500 worldwide - aged two, and although he is mobile, he is non-verbal and has no concept of danger.

His dad Stephen said: “It was a complete shock when we got the diagnosis.

“Once we learned about the condition and we came to terms with the physical practicalities of it we realised that our hopes and dreams of a ‘normal’ family life would not happen.”

Michael requires constant supervision due to the nature of his condition.

Stephen said: “He needs help with everything - feeding, getting dressed etc.

“One of the side effects of his condition is that Michael will chew anything around him.

“He has no ability to play with toys and cannot make eye contact.

“Because of his condition, he can’t give anything back.

“All the things that most parents take for granted do not exist.”

Although Michael is mentally impaired by his condition because he does have physical mobility the family do not qualify for any sort of grant to enable them to modify their house.

This is why they have started a crowdfunding page, in an effort to make their home safer for their son.

Stephen said: “We recently managed to move to a bungalow to remove the risk of stairs.

“We would like to raise enough money to help us adapt the property to give us an open plan living area so that Michael can be watched at all times whilst still being able to lead a more normal life.”

The initial page has set a target of £30,000, although Stephen estimates the total cost of the adaptations will be nearer double that.

So far the page has raised £2,270.

It can be viewed at www.justgiving.com/crowdfunding/stephen-west