Trust is very important to Kerry Worthington. Every day she puts her trust in the school health team at Valence School which her 15-year-old son has attended since he was four.
Paul has Sjogren-Larsson syndrome, an inherited disease that affects his skin, eyes and muscles meaning he has to use a wheelchair and a communication device. The condition causes a thickening of his skin, and itchy dryness, and makes his eyes sensitive to bright lights.
The cars-mad teenager was born with the condition but didn’t get diagnosed until he was three.
It was Kerry’s dogged determination and internet research that gained him a referral to see Professor Harper who is a world expert on the rare condition, at Great Ormond Street Hospital (GOSH).
Paul remains the only child at GOSH to be diagnosed with the illness in the past 12 years.
The family chose Valence because of the on-site care team.
Kerry said: “Paul doesn’t have to miss too much schooling to attend all his appointments, and because I work part-time I can trust the staff, to look after him, and attend his appointments if I can’t. They know him as well as me.
“If we need any equipment at home and the school has already done his assessment at school, then it’s easy to get everything into place quickly because it’s the same team.”
With his cheeky sense of humour, the popular student boasts lots of friends at the school, where he boards two days a week. He said: “My best friend is Ben. I love Disney Cars 2. My Christmas list had lots of cars on it. I play wheelchair football with my friends, but just for fun.”
The school has recently bought a new standing frame that Paul can use. Kerry said: “Standing is important for bone density. Paul spends a lot of time sitting in his wheelchair but it’s good for him to be the same height as other people sometimes, and for him to look others in the eye.
It gives him a different view on the world too, which I think is really important.”