Brave Jake (14) from Peterborough loses fight with rare condition

Jake Storer-Hamm was diagnosed with late Infantile Battens disease when he was just four years old, and his family were told he would not make his 12th birthday.

The Peterborough Telegraph reported on his journey after his diagnosis, as his family strived to raise awareness of the condition.

Sadly he died last week, aged 14, smiling and surrounded by his family after watching Cars, his favourite film.

Late Infantile Battens disease affects one in 50,000 children, causing all of the body’s functions to break down over the space of a few years.

Jake, from Orton, regularly left medics astonished by his progress.

Dad Tony said: “An awareness campaign was started with a view to getting Jake treatment in the States to slow down or even stop the progression of the disease.

“However, after several attempts to enrol on various trials it was decided that he was either too far gone, or didn’t meet certain criteria to take part, so was left to deteriorate.

“He lost his ability first to walk, then talk, and his sight was reduced down to pockets of vision.

“He also lost the ability to eat and was fed via a NG tube through his nose for the rest of his life.

“He was in and out of hospital for 10 years and at times was only given hours to live, but each time bounced back to the amazement of consultants and staff at the outstanding Amazon ward at Peterborough City Hospital.

“His final fight was on Sunday, January 19.

“He was fighting all the way, however, we managed to watch his favourite film which was Disney’s Cars, then 10 minutes after that he gave a big smile and surrounded by his family he died.

“We as a family would like to thank the amazing staff on Amazon ward at the hospital, the school he attended, Pheonix School in Orton Goldhay, and his many supporters throughout the country and the world.

“He is the second child in Greater Peterborough that has died of this rare condition in as many years and treatment now has progressed so much as to potentially stop the disease, however, it was too late for this to be administered to Jake.”

Batten disease is a fatal, inherited disorder of the nervous system that begins in childhood.

Early symptoms of the crippling disorder usually appear between the ages of five and 10, when parents or doctors may notice a child start to develop eyesight problems or seizures.