As Christmas approaches families across the UK will be excitedly making travel plans to see their loved ones so they can spend the festive season re-connecting, re-charging and just being together. However, for Devon six-year-old Jesse Goswell-Light’s family this just won’t be possible.
Jesse’s care is shared between his parents Rachel Goswell and Joe Light and he has a specialist bed to keep him safe at both their homes in the Exeter area. But without a travel version he can’t stay anywhere else, which means no trips away to see friends and family – at any time of the year.
Having the complex genetic condition known as CHARGE Syndrome means Jesse is profoundly deaf and visually impaired; he has weak muscles, balance and sensory issues and no awareness of danger. He is fully tube fed, including a ten hour overnight feed, and has a cardiac condition which resulted in open heart surgery when he was just five months old.
Mum Rachel said: “Jesse is a happy boy, he is active, full of life and has a desire to explore, but having a specialist bed is vital to his safety. Enclosing him makes him feel safe and secure, he can roll around seeking sensory stimulation without injury as the ends are padded and the boundaries of the high sides serve to keep his eyesight centred and regulated.
“He cannot get out or fall out of the bed which is especially important as he is connected to his feeding tube. He is not really aware of the feeding tube and would not know how to safely disconnect himself from it. If he was able to get out of the bed the tube would pull the gastrostomy button from his tummy and this would lead to all sorts of problems, most probably having to end up in hospital. However, the bed that keeps him safe isn’t portable.”
The travel bed Jesse needs costs £2,995, and although the family have put £1,000 towards this, there is still £1,995 outstanding, so his parents contacted Newlife Foundation for Disabled Children for help. Newlife is the UK’s leading charity provider of essential equipment to meet the needs of children with disabilities and terminal illness.
Dad Joe added: “A travel bed would open up new possibilities and also make normal family excursions possible. For example we want to go and spend Christmas with his grandparents, aunt, uncle and cousins; to spend a few days with them having a normal family gathering over the festive season without being limited to travelling there and back in a day. It would also allow us to take Jesse on holidays, visit friends and be able to stay over – we could do all the normal things that most families are able to do without limitations.
“All social development is very important for Jesse, especially developing relationships with other family members and friends which would otherwise be limited. Being able to travel and stay somewhere else for a few days would open him up to new encounters, relationships and possibilities – all of which will enable him to grow as a person and also allow others to be able to spend more time with him.”
At Newlife we need donors and fundraisers who want to really make a difference, helping us transform Jesse’s life. To find out how you can support Jesse, go to www.newlifecharity.co.uk/devon read his story and click the ‘Donate Now’ button. Alternatively, contact the Newlife County Liaison Team on 01543 431 444, email local@newlifecharity.co.uk.
Newlife guarantees that 100 per cent of monies donated or fundraised in Devon will be used to specifically help children with disabilities and terminal illness in the county. Any money raised above the amount required for Jesse will be used to help other local children as he is currently one of 17 in Devon with equipment needs of £41,094.
Pictured: Jesse Goswell-Light
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