Brave Conwy Valley girl make family proud

Dec 2 2010 by Samantha Castle, North Wales Weekly News

THE family of a nine-year-old girl has praised her courage in facing a rare genetic disorder that leaves her unable to walk.

Nine-year-old Yasmin Jones is thought to be one of only 26 people in the world with Catel-Manzke Syndrome, which as well as giving her mobility problems, also creates heart and facial defects.

But despite being in almost constant pain and taking a series of strong painkillers, Yasmin bravely fights against her illness, and is determined to become a scientist when she grows up.

“I have a very brave granddaughter,” said Yasmin’s nana, Elvira Williams, 62, from Llanrwst.

“Yasmin has a rare syndrome which affects her joints and she isn’t able to walk properly. Most of the time she is in pain but she doesn’t let it get her down. We are so proud of her.

“At the moment she is in a wheelchair and can walk a little with the aid of splints, but she has the best mum and dad and family around her who give her the strength to fight each day.”

Yasmin, who lives in Pandy Tudur with mum Bethan, dad David and four siblings, attends Ysgol Bro Cernyw, Abergele where she receives assistance from a carer.

She also has regular physiotherapy sessions and attends hydrotherapy once a week at Ysbyty Glan Clwyd.

“It’s a lot of hard work and she is constantly in pain but you will never catch her complaining,” said Yasmin’s proud mum Bethan.

“She has a whole list of things wrong with her, including facial defects, but you wouldn’t realise it from looking at her.

“She was doing really well and coping with everything the syndrome has thrown at her.

“She had started walking again but then she got poorly and was in and out of Alder Hey Hospital, which set her back.

“She gets very frustrated when she can’t walk.

“Some mornings she will wake up and after some painkillers she can get about, but other mornings she has to call me because she is in so much pain and her knees have dislocated.

“It’s a lot for a nine-year-old to cope with.

“She can control it when she walks most of the time, but she will probably end up in a wheelchair.”

Despite surgeons offering the faint hope that her knees can be operated on, Yasmin will have to wait until she is a teenager before undergoing the operation, which is normally only carried out on a single joint.

Until then the youngster is on strong painkillers and her parents are trying to adapt their house to accommodate her condition.

“We desperately need ramps everywhere now she is back in the wheelchair, and she has to be carried to bed as the doors are not wide enough, which all costs money,” added Bethan.

“Yasmin has described this year as the worst of her life, which is very disheartening to hear.

“We just want to make her as comfortable and fulfilled as possible,” she added.