Video: Meet Jake - the nine-year-old who suffers with epilepsy so severe he has had to teach himself to walk four times
08:00 30 May 2014
For nine-year-old epilepsy sufferer Jake Rose, even the simplest of tasks are made impossible by the 200 seizures he experiences every day.
The youngster’s complex partial epilepsy has meant years of hospital trips and physiotherapy - and has forced him to teach himself to walk four times.
But a pioneering surgery in a hospital in America which would mean taking away almost a quarter of Jake’s brain is giving the Rose family hope that his condition may be cured - but the £100,000 cost of the operation has forced them to start desperately fundraising.
At two years old, Jake was diagnosed with epilepsy and spent time in hospital in the Costa Del Sol, where he lives with his mother Debbie and sister Sophie.
But it wasn’t until he was seven that his condition worsened, leading to constant trips between the Costa Del Sol, a specialist children’s hospital in Madrid and his aunt and uncle’s home in Ashwellthorpe, near Wymondham.
A year’s stay in hospital revealed that Jake, who goes to school in Spain, had a Focal Cortical Dyplasia - an abnormality which means the neurons develop larger than normal, causing signals to misfire and cause seizures.
In 2013, Jake’s fits became so bad that he lapsed into a continuous state of seizure and was put into an induced coma three times. Over 18 months, the brave youngster went through four major seven-hour operations - making him the only child in Europe to have gone through as many.
His mother Debbie Rose, 50, said: “I slept in a chair next to his bed. It has been really hard - but I know I’m lucky because I have had the support of all my family at home.
“It just takes over your life and consumes you.”
The dyplasia has caused Jake to lose sensation in his left hand, suffer facial paralysis and lose his peripheral vision. It has even started to affect his memory.
Mrs Rose said: “I had a call from the school saying that he had gone to the toilet and got lost and confused about where he was. He was so upset.”
But the youngster has done his best to remain upbeat, his mother said.
“He does stay positive, but at times he gets very very down. He just wants to be like normal children. As it gets older it gets harder,” she added.
The family hope that the Rainbow Clinic in Cleveland will provide some relief for Jake - although the operation will be risky.
“They will take around a quarter of his brain - a huge section and the area surrounding it and then disconnect it,” Mrs Rose said.
Although the operation is likely to leave Jake in a wheelchair, the devoted mother said that it would be worthwhile.
“It could be his last operation. He takes six different types of medication a day - all intended for adults. It will give him a better quality of life - he is a strong, brave boy,” she added.
The family are halfway towards their fund-raising goal, but are urging people to come forward to help.
If you would like to help the Rose family, visit www.gofundme.com/5ez8nc
Do you have a fundraising story to tell us? Contact Lauren Cope on firstname.lastname@example.org