Courageous Cardross mum wants to help others

Nov 28 2008 by Laura McLachlan, Lennox Herald (main ed)

A MUM who lost her baby boy before he reached his second birthday has started a charity to help others with his condition.

Jack MacPherson seemed like a perfectly happy and healthy tot for the first six months of his life.

But after contracting a virus, Melanie noticed her fun-loving son wasn’t quite himself.

The Cardross woman said: “I noticed his head control wasn’t as good, he was off his food and wasn’t even kicking his legs when he was getting his nappy changed, which was so unlike him.

“His arms and legs were stiff and eventually he wasn’t smiling or laughing either.”

Melanie and her husband Scott discovered that Jack had been born with a rare genetic disorder called Krabbes disease – an incurable condition which affects just one in 200,000 babies.

From then on the couple dedicated all of their time to making their little boy’s life special until he sadly passed away in April this year.

But now Melanie, with the help of 10 other affected parents, has set up Save Babies Through Screening – a charity which strives to have babies tested for genetic disorders from birth.

Melanie, 33, said: “It is important that these types of disorders are detected in babies as soon as possible because in some cases there are things that can be done to improve the quality of life that child leads.

“There is a charity which does the same thing in America and it has been very successful.

“Extensive screening is done in America, whereas in Britain only four disorders are screened for, when it is possible for between 29 and 50 to be done.”

The charity is also there to provide a support network to families who have just had their child diagnosed.

“We want to put people in touch with other families who have gone through the same thing,” explained Melanie.

“Just being able to speak to someone about it or share experiences really does help.”

Being involved in the charity has kept Melanie going through the hard months after baby Jack’s death, and she believes a part of him lives on.

“A woman had read about Jack in a magazine and had looked up the disorder on the internet. She found a video montage we did of pictures of Jack and she immediately decided to organise a huge fundraiser down south to raise money for the Jack MacPherson fund – which just goes to show how much he has touched people and still does,” she said.

And to get the ball rolling on raising funds, Melanie’s workmates held a charity race night at the Old Kilpatrick Bowling Club last week and raised an amazing £3000, while two other colleagues did a sponsored cycle accompanied by mascot – Jack the bear, in honour of CHAS.

Melanie said: “I’d just like to thank everyone for what they have given so far. Hopefully the charity will grow and grow and make a real difference.”

To find out more about how you can get involved with Melanie’s charity, log onto http://www.savebabiesuk.org.