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Mercy pedal for boy with rare disease

PUBLISHED: 13:02 10 June 2010 | UPDATED: 11:45 23 August 2010

ANXIOUS: Mum Theresa with little Louise.

ANXIOUS: Mum Theresa with little Louise.

A CAMPAIGN to raise vital funds for the family of a child whose rare disease has left him helpless has begun. Louie Gorman, aged five, from Vigo, was born with a segment of Chromosome 1 missing from his DNA, a condition so rare his father says there may

A CAMPAIGN to raise vital funds for the family of a child whose rare disease has left him helpless has begun.

Louie Gorman, aged five, from Vigo, was born with a segment of Chromosome 1 missing from his DNA, a condition so rare his father says there may be less than 10 others in the world with it.

He also suffers from the neurological disease Periventricular Lukomalcia.

Unable to walk, talk or feed himself the tot has had surgery to rebuild his hip, suffered a series of seizures a year ago and as he grows his bones are developing faster than his muscles, requiring future knee and calf surgery.

Completely reliant on his parents Brian, 48, and Theresa, 41, Louie will soon be too big to be loaded into the family car by his mother and an £8,000 chairlift is desperately needed.

Mr Gorman, a fireman who works in Bexley, said: "As a family we have been able to cover his costs so far and have received fantastic support from the community. We will buy a new car to fit him, which of course we will pay for but then there will be the cost of this chairlift on top. To us that is a huge outlay."

To raise the funds, Louie's uncles Glyn and Grant Bowyer and family friend Dave Hawks joined Mr Gorman on a cycle from John O'Groats to Land's End, that was due to finish this week.

Glyn, of Halling and Mr Hawks of Upper Halling are cycling the full 870 miles, with Grant and Mr Gorman driving alongside to help set-up camp, cook meals and provide support in case of problems.

Before leaving he said: "None of us have done anything like this so it is going to be quite a challenge.

"People have been fantastic."

The effort is sponsored by local companies such as Alltask Ltd, Hoist & Co Timber Merchants, Wright's Groundworks, Cooks of Culverstone and Costcutters in Culverstone Green.

The family will need the chairlift installed before the end of the year and ask that anyone who wishes to help call 079 7215 7997.

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