Oscar is extremely sociable and loves spending time with his family, carers, and young people his own age at college. Oscar loves going out and about on trips to be among other people, and he especially enjoys going on buses, trains, in taxis, and going swimming.

Oscar is well loved in his hometown, with people frequently stopping to say hello to him. Oscar’s mum, Hazel, said, “He has a magnetic charm and people are drawn to him.”

When he was 11-years-old, Oscar was diagnosed with Okamoto syndrome, a rare genetic condition characterised by obstructed urine flow, low muscle tone, heart defects, intellectual disability and global developmental delay.

As of 2019, 26 individuals worldwide were known to have Okamoto syndrome. With so few known cases in the world, there is very little research and help available for people like Oscar and his family.

Hazel said:

Oscar is a wonderful, loving, extraordinary young man. He has gone through an incredible number of debilitating illnesses and 21 operations, but he continues to wow with his resilience, strength of character and loving nature. As his parents, we think he is the bravest person we know. He bounces back from terrible medical problems and is an inspiration to everyone he meets. He has taught our family, our friends and our community many things.

Oscar has recently started wearing a BiPAP mask at night to help balance his oxygen and carbon dioxide levels when he sleeps. He also has physiotherapy for his back pain, hypotonia, respiratory issues and general health, weekly neck and back massages to help when his muscles seize up, and weekly hydrotherapy.

When walking, Oscar needs physical support holding his arms as his legs are easily injured. If he is using a walker, he needs someone to guide him to keep him safe. Oscar and his family came to Variety, the Children’s Charity for help funding a wheelchair to help Oscar’s mobility.

Oscar has received three previous wheelchairs from the charity. He had outgrown his previous wheelchair, having had it for three years, and needed a replacement to help maintain his posture and keep him comfortable.

Hazel said:

Oscar is an out and about kind of guy so having a supportive quality wheelchair is instrumental in him being to able access college, the world and being more independent. He easily gets pressure sores so it is very important that the wheelchair was made for his exact requirements.

Variety has been instrumental in getting us the equipment we need for Oscar: in particular, wheelchairs that fit him properly and that are best suited to meet his needs. We are hugely grateful to Variety and everyone we dealt with at Variety was extremely kind and supportive.