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Video: Cash appeal to help Jake fight
THE family of a Peterborough boy battling a disease which could claim his life by the age of 10 have launched an appeal to help give him a fighting chance of survival.
THE family of a Peterborough boy battling a disease which could claim his life by the age of 10 have launched an appeal to help give him a fighting chance of survival.Bubbly Jake Storer-Hamm (4) suffers from Late Infantile Batten disease, which affects around two in 100,000 children.
The cruel, inherited disorder strikes the brain and slowly breaks down all the body's functions, eventually leaving those affected deaf, blind and unable to move their arms and legs.
Jake, of Gretton Close, Orton Longueville, was a normal, healthy child until January 2009, when he began suffering fits. Doctors first suspected epilepsy, but in November, Jake's parents Liz (43) and Tony (46) were dealt the devastating news that he had Batten disease.
They are now determined to do everything possible to give him a chance to lead a normal life.
There is no cure for Batten disease but new treatment trials are being held at Cornell University in New York. If it becomes available, Jake's family want him to benefit and have launched an appeal to raise funds for the 20,000 it could cost.
His brother Alex Chapman (20) started the appeal on the internet site Facebook a week ago and it has already attracted 4,000 members, including Radio One DJ Trevor Nelson, who is a friend of Jake's dad and is throwing his weight behind the campaign.
Student Alex, along with brother Tom (23) and sisters Hannah (18) and Alice (16), want to help their little brother.
Alex said: "He's always bubbly and full of smiles. When he gets to the age of eight, he will lose his sight and might not be able to speak. He will be completely paralysed. It's a horrible disease. I'm not willing to let it take Jake without a fight."
Although Jake, who modelled for Tesco before he fell ill, loves playing football and building train sets, he is on a cocktail of medication to control his fits and has problems walking.
Mum Liz said: "Initially, we were so distraught, we were unable to do anything. But as time's gone on, we have looked into research going on around the world, some of which looks positive. We want to make people aware that the condition exists. There has never been anything in generations of my family, It's just bad luck Jake has it."
You can help by visiting www.facebook.com and typing in Jake's Appeal or calling Liz on 07766746511.
Factfile... on Late Infantile Batten disease
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.
Over time, affected children suffer mental impairment, worsening seizures, and progressive loss of sight and motor skills.
Eventually, sufferers become blind, bed-ridden and need constant care. No treatment is yet available to cure or slow the progression of Batten disease.
Most sufferers do not live beyond the age of 10.
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