When Hampshire teen Dylan Miles was terminally ill with chronic kidney failure the help his family received from the UK’s leading disabled children’s charity was ‘priceless’.
The 17-year-old from Aldershot needed a range of equipment throughout his life, but when his family were told Dylan’s condition was terminal in March 2013 they contacted Newlife Foundation for help. They were given a specialist bed and an extra supportive wheelchair through Newlife’s Just Can’t Wait service and a grant for a specialist seat – which all kept him comfortable enough to continue to giggle and play with his family.
Dylan was born with the rare genetic condition Wolf Hirschhorn Syndrome. As a result his abilities never developed beyond those of a young baby. He also had epilepsy and in 2009 underwent surgery to correct a severe curvature of the spine. Throughout his life there were hospital admissions due to chest infections, pneumonia and kidney problems. When Dylan’s kidneys began to fail; the family were initially told Dylan had less than a year to live – but his family enjoyed 18 months with him before he passed away recently in October 2014.
His parents Dominique Morrison and Darren Miles agree that although he had limited development, Dylan was fully aware of his surroundings and the people in his life.
Mum Dominique said: “He was a very sociable boy and even seemed to understand the punchlines to jokes, which would make him giggle. He was a laidback chap and every photo we have of him has him smiling. He rarely cried and was always so happy to see you. He lived completely in the moment and his love was truly unconditional. We miss him so much.”
“Dylan was the youngest of our three children. Our daughters Carly and Chloe were only two and one years old when he was born. Those early years were such a struggle and we received no help from our local social services, just getting fobbed off year after year being told there was no money for us to have help. Every penny we received for him or piece of equipment was usually the result of a long battle. Very often the equipment was not ideal, and it was as a result of this that I found out about Newlife.”
When Dylan was diagnosed with terminal kidney failure his mum had spent over two years going back and forth to their wheelchair services trying to get a suitable headrest for Dylan. His head would tilt over to the left as he had weak muscles, putting a lot of strain on his neck.
Mum Dominque said: “I was so frustrated they couldn’t provide me with what he needed, even though they had seen him in his chair. I had also been trying for the same length of time to get some comfortable seating he could use at home and a new bed, as his existing adjustable bed had been broken for over a year.
“I was determined that Dylan would not end his life in discomfort and spent hours every day for weeks trawling the Internet looking for equipment and funding. Eventually I found a wheelchair I was happy with and contacted Newlife to apply for funding. After explaining Dylan’s condition and prognosis to the Newlife nurse, she suggested that we could borrow a Chunc wheelchair and a bed and from the Just Can’t Wait Service as well as applying for a grant for a P-Pod. He received all of the equipment within three weeks. It was like Christmas had come early and such a relief to have spoken to someone who understood our difficulties and who was happy to help.”
When Dylan sat for the first time in his P-pod, which is essentially a bean bag base with a secure moulded seat attached, his relief was immediate. Mum Dominique said: “He actually sighed in comfort, as if to say ‘Oh, yeah, I love this!’. He looked like a king on his throne.
“There are not enough words to explain how grateful we are to Newlife, for taking away the stress of trying to provide the equipment our son needed and enabling us to make the most of the last 18 months of Dylan’s life, happy knowing that he was able to make the most of every experience we shared in complete comfort.
She adds: “It was such a relief to work with an organisation that was happy to help Dylan get what he needed when he needed it – that was priceless.
Newlife’s Just Can’t Wait service aims to deliver emergency equipment including wheelchairs, buggies, beds, portable hoists and seating to the homes of life-limited and terminally ill children within 72 hours. Newlife has awarded more than £12 million of grants for a wide range of specialist disability equipment.
Newlife Lead Nurse Karen Dobson said: “We are glad the equipment we were able to give the family made a difference to Dylan when he needed it. We always aim to provide a listening ear for families when they are at their most vulnerable; they need someone to understand their situation and support them getting the help they need when they need it. Even if they are not sure what this is, our nurses have years of experience to help guide them to the best solution.”
Newlife has funded 271 Equipment Grants for children in Hampshire at a cost of £485,376. With the charity currently experiencing a surge in applications the charity is increasingly looking to ‘local heroes’ to help children in Hampshire like Dylan. Newlife guarantees that 100 per cent of all monies donated or fundraised in Hampshire can be ring-fenced to specifically provide equipment for disabled and terminally ill children within the county. If you would like to help, contact the Newlife Community Fundraising Team on 0800 988 4640 (free from UK landlines) or by emailing fundraise@newlifecharity.co.uk.
If you would like to speak to a Newlife Nurse, contact 0800 902 0095 (free from a UK landline) or on 01543 468 400. Alternatively you can email nurse@newlifecharity.co.uk. For more information about Newlife and the range of services they offer, visit www.newlifecharity.co.uk.
Pictured: Dylan Miles
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