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Hope girl's condition 'not seen in Wales for quarter of a century'

Published date: 05 March 2014 |
Published by: Elin McDonald
Read more articles by Elin McDonald


 

A BRAVE young girl who has battled a condition “not seen in Wales for quarter of a century” is now facing even more surgery.

Madison Hayward, eight, from Hope, was born with disorganization-like syndrome, an extremely rare illnes which causes deformed limbs and organs.

As a baby Madison faced open heart surgery and even had to have a leg amputated after being born with one kidney, a defective heart and a disfigured right leg.

Her mum Rebecca said baffled doctors told her the condition has not been seen in Wales for 25 years.

Now she has spoken out about her courageous daughter’s battle with the condition, which will see her return to hospital for more open heart surgery in the coming weeks.

And as a thank you to people who helped Madison and the family through her surgery, a sponsored slim is being held to raise funds for the Ronald McDonald House at Alder Hey Hospital in Liverpool.

Proud Rebecca said Madison has come through her illness with a smile always on her face.

She said: “Madison has had four operations in total now but it doesn’t stop her.

She’s full of it - like any other eight year old.

“She desperately wants to ride a bike but she can’t - but she has coped remarkably with everything.

“She deals with everything so well.

“She has to have a new leg fitted often because she’s growing up quickly.

“Madison has gone down in medical history because not even the doctors know exactly what is wrong with her.

“The doctors said that she could have died.

“I adore her. She’s my first girl.

“She loves putting on her makeup and doing her hair just like me. She’s my world.”

Madison, who is the only girl among five children, is due to return to hospital before April 7 for yet more surgery on her young heart.

Mrs Hayward said: “Madison was born with a condition which hasn’t been seen in Wales for 25 years.

“She had to have her leg amputated, but now I want everyone who has helped to see how well she has grown up.”

Mrs Hayward is now fundraising for the Ronald McDonald House at Alder Hey Hospital in Liverpool - accommodation located near the hospital where they stayed while Madison was an inpatient.

The Slimming World group in Llay, Wrexham, are doing a sponsored slim, which is due to last six weeks, to raise money for the good cause.

Rebecca and six other ladies at the Slimming World group will be taking part, losing weight and raising money for the cause.

She added: “I want to raise the money for Ronald McDonald House at Alder Hey, which is where Madison had her surgery.

“I’ve always wanted to raise money for them. It was somewhere for her to escape to when she was in intensive care.

“I know that I have to lose weight and I want to lose weight so that I can do more things with Madison.

“Everyone in the club has now got involved.”

The group started their sponsored slim on February 23 and will continue for another five weeks.

The group hope to get as many sponsors for the challenge as possible and would be grateful for any donations.

Anyone who would like to support the sponsored slimmers can contact Gail Carver on 07545 907004.

For more news from across the region visit newsnorthwales.co.uk

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