A disabled teenager in Tamworth has been gifted a set of sensory lights from local fundraising group, Simon’s Heroes, to help to stimulate and make his day to day living more fun.
Jack Parker, 16, has undiagnosed Global Developmental Delay which was first detected when he was 9 months old. The condition affects all areas of development, including motor, speech, language, cognitive, and social skills.
Jack is severely physically and mentally disabled. He is prone to seizures, unable to talk and spends most of his time in his wheelchair. Despite his 6’1’stature, he is a very fragile young man – his bones are very brittle and great care is taken when moving him about.
At the age of 13 he spent 9 months in hospital suffering from a twisted bowel. During this time and for 3 years thereafter he was tube fed through his heart which his mum helped administer once he was home. He wears a colostomy bag and suffers from recurrent water infections which are requiring fortnightly hospital visits to treat.
Jack is a pupil at Saxon Hill Academy in Lichfield, a special school for children and young people with physical disabilities and complex medical needs, where he attends when he is well enough. The school provide sensory facilities which Jack enjoys.
‘Jack is very sensitive to touch. He was 6 years old before he could hold or touch anything,’ Jack’s mum Julie told us. ‘The sensory toys help to stimulate him. He spends a lot of time in hospital so stimulation is important for fun times. He loves watching lights, bubble tubes and playing with sensory toys.’
Jack lives with his mum Julie, her partner Kevin and step-brother Ryan in the family home. When Jack is not well enough to attend school, his mum takes care of him. Outside of caring for Jack, Julie works for St Giles Hospice, ‘It gives me another focus, as well as giving something back.’
‘My partner Kevin is a great support; he treats Jack as his own and will do anything for him. He becomes Jack’s carer whilst I’m at work. He’s a wonderful man and we’re very lucky to have him in our lives.’
Julie has also found solace through SWAN UK (Syndromes Without A Name) – a project run by Genetic Alliance UK offering support and information to families of children with undiagnosed genetic conditions. ‘The members-only forums provide a channel through which I can chat to other families in similar situations. We share experiences, advice and information. It helps me to manage the challenges…it’s a release. If I’m tending to Jack through the night, there is always somebody online to chat to.’
‘Thank you to Simon’s Heroes for Jack’s lights. He can enjoy them all the time, not just when he’s at school. They pick him up when he’s having a bad day. He benefits so much more being able to enjoy them at home.’