Parents to open charity shop to help son with rare genetic disorder

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Tuesday, February 16, 2010
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This is Croydon

by Brian Haran

There are only about 75 children like Jake Flint in the world – and for the youngster's parents that has meant a long and determined struggle.

Jake, now 11, suffers from an extremely rare genetic disease – and was the first person in the UK to be diagnosed with the disorder.

Now his parents, who have helped raised thousands of pounds over the years for research into the condition, are about to take a step forward on their own doorstep.

They will set up a charity shop in Limpsfield Road, Warlingham, which will be opened on March 13 by pop singer Gabrielle.

In his early years, Jake who attends St Giles School in South Croydon for children with learning difficulties, was believed to have quadriplegic cerebral palsy.

Doctors said he would be confined to a wheelchair for life.

But Jake of East Parkside, Warlingham, was diagnosed with Aromatic Amino Acid Decarboxylase (AADC) deficiency when he was three.

It means he lacks the crucial enzyme which creates chemicals in the brain regulating movement and mood, so Jake's mobility, learning abilities and behaviour are affected.

Doctors prescribed medication normally used for patients with Parkinson's Disease, which had a dramatic effect.

His mother Lisa, 42, who co-founded the AADC Research Trust with her husband Tony, 45, said: "Jake's gone from a wheelchair-bound boy who was unable to communicate and had no real physical strength to a youngster who is now able to walk and talk.

"We feel blessed that Jake is still with us, but we still have a long way to go.

"Life's a struggle for Jake, so we're doing everything we can to help him."

Lisa has two other sons, Charlie, 19, and Ben, 15.

Their small charity has raised more than £100,000 since it started in 2006.

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