warning : movie contains rat scene - signalled by boy's entry into sewer to retireve lady's purse.
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this movie was on BBC2 brit tv last sunday.

kieran portrays a severely disabled boy - displaying gumption and wit - who forms a special friendship with an older boy (elden henson) who's been traumatised by seeing his mum murdered by his dad.

excellent performances all round.

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[the illness afflicting kieran's character - his heart too big for his body - is `morquio's disease`.

this upsetting condition features in a documentary on the uk `sky 1` satellite channel the boy who will never grow which will  be broadcast 23rd january at 22.00 hours.

doc from (You need to Login or Register to view media files and links)

..."i want to make this film", says jack bird, now aged nine, "so that people will understand. then maybe i won't get picked on and i'll get a bit of respect".

despite his disability jack strives to play an active part in school life.

jack's younger brother couldn't have a better role model as he too faces up to a future with a disease that could see his life span cut cruelly short.

the internal organs grow within a stunted skeleton and as jack's condition deteriorates he'll need an electric wheelchair and then a specially adapted car to carry it.

but as jack says :

"size isn't everything".
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here's an article about jack which was in his local paper :

Independence day

New wheelchair and car for Jack, nine, and family

BY KATIE BALDWIN

A NINE-year-old boy with a rare bone disease is looking forward to a mobile new year thanks to a mammoth fundraising effort.

Brothers Jack and Lewis Bird both have genetic disorder Morquio's Disease, so their spines stopped growing at the age of three but their internal organs and limbs continue, putting huge pressure on their chests.

The youngsters from Leeds - one of only two known sets of siblings in the world with the illness - will have a drastically reduced lifespan and nine-year-old Jack has to use a wheelchair.

Until now he only had a conventional chair but thanks to the White Rose Centre in Morley, Leeds, he can finally whizz about independently, join in with his friends and enjoy days out with parents Paul and Julie.

Shoppers, staff and contractors raised more than £8,000 in just seven weeks and bought Jack an electric wheelchair through the Shopmobility store in the centre.

It was given to Jack as a surprise early Christmas present.

His dad Paul said: "Jack's face was a picture. We are astonished at the generosity of everybody at the centre and would like to say a big thank you to everyone who has helped us.
"This means so much to us as a family because we can now enjoy days out together – and I will also be able to take both boys out on my own for the first time ever."

The cash was raised through donations at the centre's Christmas Grotto, fundraising events and an ongoing sponsored slim by centre manager Peter Cook.

Mr Cook said: "White Rose is a centre for the community and we were delighted to be able to channel that community spirit towards helping Jack and his family.

"I never fail to be amazed by the kindness of people who work in and visit White Rose and this year they have excelled themselves with a record amount of money raised in such a short space of time."

Since the boys' story was reported in the YEP in August, readers have rallied round.

A massive £20,000 has been collected, which has gone towards a special car for the family so the wheelchair can be transported.

"Everything has come together at once. We have been loaned a set of ramps so we can get the wheelchair in and out of the car," said Paul, from Cookridge.

He said they still needed about £8,000 to pay for the car in full and the adaptations. In future, five-year-old Lewis will need an electric wheelchair too.
Among the contributions to the fundraising have been events organised by Neville Hill Social Club in Osmondthorpe, fundraising by Cookridge firefighters, football matches and bag packs, and donations by individuals and organisations.

l For more information about Jack and Lewis or to make a donation, write to P0 Box 234, Leeds, LS16 0AR, or send a cheque payable to JLMF.

30 December 2005

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