Mum's tribute to brave son

Colin Hutton • Published 22 Sep 2009 15:34

MELANIE and Scott MacPherson sadly lost their first child to a rare genetic disorder at just 21-months-old.

Little Jack passed away from Krabbe disease - an incurable disorder which affects the nervous system - on April 29 last year.

But, to their joy, five weeks ago the Cardross couple welcomed baby Oliver into the world.

When Jack was diagnosed with the disorder, it was devastating for the young parents.

But they cherish the wonderful memories of him, and now Melanie, 34, has set up a charity to help support others who find themselves dealing with the disease.

Melanie took some time out this week to tell the Reporter about the ups and downs they have had to cope with since Jack's birth in 2006.

"When we found out I was pregnant with Jack in the Christmas of 2005 we were obviously both delighted because we were going to be parents for the first time.

"We had just bought our new home as well so it was a really exciting time for us.

"When Jack was born it was absolutely amazing.

"We did not know there was anything wrong with him, but in February 2007 he started to seem a bit off and was just not his usual self.

"He was always a smiley, happy, contented baby but this started to change.

"First of all he started to lose his head control, then his arms and legs started going rigid too.

"We went to the doctors initially and were told it was probably a virus or something.

"But he did not improve, so we took him to the Royal Alexandra Hospital and while we were there he started having seizures.

"This led to a series of tests and very quickly he became so ill.

"They sedated him and after he came round he was not the same wee boy again.

"It was heartbreaking for us to watch, but the hardest thing was not knowing what was wrong with Jack.

"Eventually they diagnosed it as Krabbe disease, which I had never heard of before.

"It meant absolutely nothing to me but the doctors quickly told me it is one of the worst illnesses children can get.

"The average life expectancy is just thirteen months and by the time Jack was diagnosed he was already eight months.

"We were just told to take him home and make him comfortable and were also put in touch with Robin House, which was absolutely great and provided lots of help.

"Jack managed to twenty-one months and during that time he was quite stable, so it meant we could do a lot of things and have some great memories.

"We decided that we had to make the most of our time together by going to family events and on trips.

"After he died another woman, who lost her granddaughter to Krabbe's, contacted me and we went about setting up a charity.

"This has now become something very important to me and I will be involved as much as I can, for as long as I can.

"The aim is to provide support and information to families who have children with Krabbe's and other similar genetic disorders.

"Part of the reason I wanted to be involved in the charity is because when I was told that Jack had Krabbe's I had nowhere to turn for advice.

"We are also trying to push for people to be screened for more things during pregnancy because in Scotland at the moment they only screen for three, whereas in the United States it is for well over fifty.

"I always just assumed that they screened for all the conditions they could and I was shocked that they did not, so we hope to change this.

"After what had happened with Jack, when we found out I was pregnant again it was worrying that this child might have the same problems - but when we found out he didn't we were naturally ecstatic.

"As soon as Oliver was born we were both instantly besotted and he's a great wee boy.

"I was a little worried that Oliver was going to look really like Jack but there are only resemblances, which is actually really nice.

"It's amazing how much our lives have changed in a year, but here Oliver is and he is healthy - we are so happy."

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This article appeared in Dumbarton & Vale of Leven Reporter 22 Sep 09

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