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Friends plan events to convert room for Lewis

LITTLE Lewis Broadley watches the big pink dinosaur dance across the screen and smiles.

The nine-year-old Falkirk boy never takes his eyes off the large television as Barney and his cartoon pals get up to their musical antics.

Watching him enjoy the scene with his three-year-old sister Megan, you would never think Lewis had less than 10 years left to live.

The Torwood School pupil suffers from a rare terminal disease known as Mucopolysaccharidosis III, or Sanfilippo Disease, and, since being diagnosed at the age of four, has lost his hearing and speech.

Sadly this once active boy, who loves attending school and visiting Rachel House, is becoming even more unsteady on his feet and his parents now need help to convert the ground floor of their Alma Street home into a special bedroom for their son.

The conversion will cost in the region of 40,000 to 70,000, but the Broadley family and their friends are committed to making Lewis's remaining years as happy and comfortable as possible.

On hearing the cost of the work, close family friend Catriona Arnott decided to organise a number of charity events to raise some of the money needed.

The first fundraising event will be a charity dinner dance at the Inchyra Grange Hotel on Saturday, February 24.

Catriona said: "This is just the beginning – we want to involve as many people as possible in this and make as many people aware of this disease as we can.

"We want to make life easier for Lewis and for Gordon and Norma too. We have pooled our resources among everyone we know and called in a few favours. A few local businesses have already shown an interest in helping us out."

As well as the fundraising events, the Broadleys hope to obtain a grant from Falkirk Council which will pay 50 per cent of the required costs.

Sanfilippo Disease causes progressive physical disability and, in some cases, severe mental deterioration. Children afflicted by the disease rarely live past their teens.

Lewis's dad, Gordon (43), said: "There is research being carried out and they say they will have something in five to 10 years which can slow the progress of the disease down or stop it.

"That will be too late for Lewis though, the damage is done now. Every day he gets a wee bit worse, but it's so gradual you don't even notice it."

Mum Norma (40) said: "When he was born he was absolutely normal, but by the time he was two we started noticing his development was not going as well as other children.

"Then he began having problems with his balance and his hearing."

Tickets for the dinner dance are priced 30 each or 300 per table and must be paid for by Tuesday, February 13.

If you would like to help Lewis and his family you can call Catriona on (01324) 720044 or visit the website at www.caringbridge.org/visit/lewisbroadley

j.trimble@falkirkherald.co.uk

 
 
 

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