Published: 00:01, 11 January 2016
A seven-year-old boy, who has already experienced more pain and suffering than most people will in a lifetime, needs £150,000 for lifesaving treatment in America.
Jamie-Lee Dearing, a pupil at Ditton Junior School, was diagnosed with an inoperable brain tumour just over a year ago, when he was only six.
The tumour is in Jamie-Lee’s brain stem, in the part of the brain that controls vomiting, and if he does not constantly take steroids he is sick between 10 and 15 times a day.
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But the steroids have detrimental side effects so the only option is a course of proton therapy, a type of radiation treatment, that is only available to him in Jacksonville, Florida, or Oklahoma City, Oklahoma.
It will reduce the size of the tumour, stop it pushing on the vomiting centre and give Jamie-Lee a chance of living a normal life.
Mum Jodie Dearing, 31, who has three other children, all with health conditions, said: “Without this treatment he will either remain on steroids, which is not healthy for him, or he’ll come off the steroids and keep being sick and being sick, losing weight until the point he dies.
“Jamie-Lee has always been happy and he worries about others before himself. His friends all love him. They’ve grown up with him since pre-school and they know the basics of his illness.
"He’s been off sick since October and they’ve all made him get well cards. He loves Lego and is really into Star Wars Lego at the moment.
“He gets really tired and struggles to walk. For long distances he has a wheelchair and has knee braces and special shoes.
"The steroids give him puffy skin and long-term they will affect his bones, and he already has weak bones. Doctors have tried taking him off steroids before but he ended up on a feeding tube in hospital.
“Proton therapy is a type of beam therapy that targets one specific area and is not as invasive as radiotherapy over here. If it works he’ll be able to go back to school and be a normal child again.”
"Jamie-Lee has always been happy and he worries about others before himself. His friends all love him" - Mum Jodie Dearing
Before the cancer diagnosis the youngster, who lives in New Road, Ditton, already had debilitating skin and bone condition Ehlers-Danlos syndrome (EDS), had endured two operations due to having hip dysplasia, a condition where the hip joint does not form properly, and had gone into anaphylactic shock after suffering a severe allergic reaction to his grandparents’ rabbits and guinea pigs.
The family, dad Lee, 30, sisters Holly, 15, who has autism, and Lara, five, who is being tested for EDS, and brother Cameron, 11, who has ADHD, is hoping to receive some funding towards the therapy from the NHS, via charity Kids ‘n’ Cancer, but they won’t find out if they’re eligible for several weeks.
British charity Kids ‘n’ Cancer was set up in 2010 to raise funds for children who need to travel to America for proton therapy.
When a family approaches for financial help, staff first apply to the NHS, which will pay for treatment for children who meet a certain, undisclosed criteria.
If this attempt fails, Kids ‘n’ Cancer launches an individual appeal for each child, aiming to raise enough to pay for the treatment plus flights and living costs for the family, both in the UK and America, for the three months they are abroad.
If the NHS pays for treatment and flights and accommodation for Jamie-Lee and his parents, the charity will still help with the additional costs, including flights for siblings.
Operations manager Andrea Hooley, who is due to meet Jamie-Lee and his family next week, said: “Treatment costs differ between £80,000 and £120,000 depending on the child.
"They don’t have a national health service in America so an injection can cost $2,000 or $3,000.
“We’ve just raised £150,000 for another child whose appeal started just before Christmas so we can absolutely raise the same amount for Jamie-Lee if we need to.”
In the last five years, the charity has helped about 150 children travel to America for proton therapy.