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I can only walk thanks to your generosity.

Byline: SPECIAL REPORT BY ZOE CHAMBERLAIN

A FOURTEEN year-old boy has told how he would not be able to walk without the help he has received from the Sunday Mercury's Give a Child Health fund.

Bubbly Ali Zaidi was born with Morquio A Syndrome, a condition so rare it affects just 40 patients in the UK and 400 throughout the world.

Yet both Ali and his brother Hadi, aged 20, have the syndrome which causes poor growth, abnormally formed bones and joints, hearing, heart and breathing problems.

"My mum and dad knew I was going to have Morquio A Syndrome when I was born because my brother Hadi has it," says Ali, from Whitmore Reans, Wolverhampton.

"We came here from Pakistan when I was nine. A year later, my bones started to become very weak. That happens with my disease, in time the joints stop working."

When Hadi was 14, the age Ali is now, his bones became so weak he was no longer able to walk.

But Ali has managed to retain his ability to walk while he is at home.

And he is confident that he will continue to be able to walk, due to an enzyme infusion treatment he receives every week at the lung function unit at Birmingham Children's Hospital - which received PS500,000 from the Sunday Mercury's charity, Give A Child Health (GACH).

"I can feel my bones getting stronger and I'm getting more healthy," he smiles.

"I do feel very tired after my treatment.

When I get home, I just feel really tired and lazy.

"The treatment works at a really slow pace, but it is helping me a lot.

"I have to keep building it up in my system. I can have a couple of weeks off, if I go on holiday, but I couldn't have more than four weeks off."

Initially, Ali went to a special school but, in time, felt confident enough to move to mainstream school.

There he has an electric wheelchair he uses to travel between lessons.

"Everyone is really nice to me at school," he says.

"I'm starting work on my GCSEs now. "My hospital treatments mean I miss a day of school every week, but there is a teacher at the hospital who comes and carries on my lessons with me whilst I'm there.

"That's great because it means I don't miss out on anything."

Ali also uses a manual wheelchair to go out and about, but manages to walk when he's at home.

The treatment also helps Ali to breathe easily.

He explains: "When I started having my treatment I was having difficulty with my breathing.

"When I walk a lot, my breathing starts to become more heavy, which is one of the reasons why I don't walk a lot.

"My breathing is improving now though."

Ali hopes to keep having his weekly infusions in a bid to keep him on his feet.

He dreams of going to college and becoming a software engineer.

Hadi has the same treatment as his brother.

Ali, who had the treatment first, said: "Because I've been having the treatment for longer, I'm growing and my bones are still growing.

"Hopefully I will carry on walking." Like so many families treated at the hospital, the Zaidis are delighted that work is underway to extend and improve the lung function unit, thanks to half-a-million pounds donated by GACH.

It is hoped work will be complete next month.

Dr Saikat Santra, consultant in Inherited Metabolic Disease (IMD), says: "Having such a good lung function unit at the hospital has meant that we have been able to take part in ground-breaking research into rare disorders like Ali's.

"In his case it is really important to see the effects of the ongoing treatment on his lungs.

"The lung function unit can pick up small changes in the way the lungs are working that the patient wouldn't necessarily be able to feel themselves. "It's great to be able to do these tests reliably and in a setting that the children enjoy."

More is known about Morquio Syndrome than previously, but there is still a long way to go with treatment.

Dr Santra explains: "We now know a lot more about Morquio Syndrome than we did 20 years ago so we are better at managing it.

"Up until recently, we didn't have any treatment that could actually alter the course of this syndrome - we were only able to manage the symptoms.

"In the future we hope that there could be a treatment capable of slowing down the rate at which the syndrome progresses."

Dr Santra says the money raised by Sunday Mercury readers will make a massive difference to children like Ali who are treated at the lung function unit.

He says: "We are all delighted that this money has been raised and we know it will benefit the children and young people we look after at Birmingham Children's Hospital.

"We'd like to say a huge thank you to everyone who has made this possible." zoe.chamberlain@trinitymirror.com How little girl's plea launched charity THE Give A Child Health fund has been helping children with breathing problems since 1953.

It was originally founded to raise money to send young Brenda Jobson, who was suffering with tuberculosis, to a clinic in Switzerland.

She contacted the paper after reading a story about Birmingham cake maker Christian Kunzle helping boys be treated in Davos.

The response to the Sunday Mercury appeal was so great that the Red Cross and Birmingham's Children's Hospital offered their support and cash was raised to send other girls for treatment in Davos.

When Mr Kunzle died, the charity was extended to include boys and changed its name from Give A Girl Health to Give A Child Health.

In 1997 the readers of the Sunday Mercury raised PS110,000 to equip and run a lung function laboratory at the new Birmingham Children's Hospital. Other projects have included the funding of an eczema nurse and the purchase of testing equipment.

Today, work is underway to improve and extend the lung function unit at Birmingham Children's Hospital - thanks to a further PS500,000 raised by kind donations from Mercury readers.

How you can help | BY POST: Send donations to Give A Child Health Fund, Sunday Mercury, Floor 6, Fort Dunlop, Fort Parkway, Birmingham, B24 9FF.

IN PERSON: Donations can also be left at our shop in Great Western Arcade, Birmingham city centre.

ONLINE: Coming soon, we will be able to accept your donations online at www.sundaymercury.net/gach.

You can also follow news of the Give A Child Health Fund on twitter. Look for @GACHFund

CAPTION(S):

KIND-HEARTED: Christian Kunzle, and family, helped boys go to Davos.

GRATEFUL: Ali Zaidi has been able to walk again thanks to the lung function unit at the Children's Hospital.
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Publication:Sunday Mercury (Birmingham, England)
Geographic Code:4EUUK
Date:Jun 23, 2013
Words:1140
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