Less than 12 months ago, Melissa Wiseman’s son TJ, was diagnosed with Pitt Hopkins Syndrome, an extremely rare condition affecting only four in one million people. Despite trying to get her head around what this means for her son – she’s having to battle with the local health authority to get him a safe place to sleep, after his Occupational Therapist advised he should sleep on a mattress on the floor so can’t fall out and hurt himself.
“I was livid,” says Melissa, who lives in Sittingbourne with her three children, 15-year-old Tia, 12-year-old Billi-Grace and TJ. “I asked her if she would do this for her child, and she said no! So, why should my son be expected to?”
TJ’s condition means that at seven-years-old, he has the mental ability of a nine to 18-months-old baby. He’s only recently learned to walk and is unable to speak. He constantly makes irregular and involuntary movements – even when he’s asleep. The only way to keep him safe at night was to keep him in a cot, but he’d massively outgrown the one he’d slept in since he was a baby, and kept falling out of his new junior bed and getting trapped down the side.
Now, thanks to the emergency response by Newlife the Charity for Disabled Children TJ has a specialist bed to sleep in and no longer at risk of serious injury or worse.
Melissa said: “We found a junior bed that was quite close to the floor and put a spare mattress at the side and lots of teddies to cushion him if he fell. But he kept falling out and getting trapped down the side of the bed – every night I would go to bed worrying.”
Lifting TJ has caused serious damage to her spine, so she’s had to have surgery and is unable to lift TJ when he falls, so was having to wake her 15-year-old daughter, Tia, to help her, which would sometime be up to 7 times a night!
“We were all absolutely exhausted,” she said. “TJ was getting more and more distressed which was causing him to bang his head on the walls. We tried everything and were at the point where we were thinking about making him big cot ourselves – then thankfully we heard about Newlife.”
Newlife runs the UK’s only Emergency Equipment Loan Service which aims to deliver equipment within 72 hours. Recognising the urgency of TJ’s situation and the danger he was in, Newlife quickly provided him with a specialist cot that is suitable for his age and size – and is now working with the family and the local health services to make sure a permanent solution can be found.
Melissa said: “Things have improved dramatically for TJ since we had the loan bed – it’s his safe area and helps him to feel calm. He’s sleeping much better and I only have to get up to him occasionally now. It’s such a huge relief and we can’t thank Newlife enough for the support they have given us, not just in providing the bed but also being our voice when I felt we weren’t being heard.
“There is so much pressure on families who are caring for a child with a disability – trying to fight to find out what help you can get on top of having to cope with the enormity of knowing your child won’t have the life you imagined for them – the support just isn’t adequate. We are trying to fundraise for TJ ourselves which has also added to the stress of the situation. But with Newlife in our corner, we feel stronger.”