I am running my first 10k in memory of Alasdair Gray. Please read his story below as told by his Mum Laura who is a friend of mine. 

Alasdair was safely delivered 10 days late on the 20th October 2013, 4th son to Laura & Fraser, and a little brother to Cameron, Lewis & Fraser.

All appeared well with Alasdair, like all babies he had his unsettled moments but generally he was a happy wee boy, we never thought for one moment he was so poorly.

The first 6 months progressed in a blur of feeding, nappy changes and sleepless nights all standard with a new baby in the house. Other than a couple of spells on antibiotics for chest infections and poor weight gain Alasdair was progressing as expected for his age. The poor weight gain was put down to his poorly spells.

At 6 months it was time to start weaning. Unlike his brothers Alasdair never took to solids. The weeks past and things were not improving, he was very fussy about what he would eat and weaning was difficult. We began to think Alasdair had food allergies and were becoming more and more concerned over his weight gain. We made an appointment with our GP.

Alasdair was referred to Raigmore hospital. After meeting with the Paediatric Doctor it was decided further tests were required to get to the bottom of the poor weight gain.

We spend the next 2 days in the children’s ward at Raigmore with Alasdair for observations and tests. He had bloods taken. Urine checked. Kidneys & Liver scanned. Nothing to cause alarm was found. The possibility of a feeding tube to try and help weight gain was discussed and an appointment was made for Monday for a sweat test to test for Cystic Fibrosis. We went home for the weekend.

Over the weekend Alasdair didn’t even want to breast feed, the only feeding he was happy to do until now. He wasn’t right and we decided we should return to Raigmore.
Alasdair was taken to the examination room in the children’s ward. Things were very quickly taken out of our hands. They tried to get blood from Alasdair and he went from sitting up looking at us to passing out.
They x-rayed his chest and discovered he had an extremely enlarged heart and he was rushed to theatre. Alasdair was in a critical state, his heart stopped more than once, we were taken up to the theatre they didn’t think he was going to make it.

We stood at the side of the operating theatre door watching them all working on our boy, an image that will never leave us. After many hours they eventually managed to stabilise Alasdair enough to transfer him to The Royal Hospital for sick children in Glasgow. It was foggy that night and air ambulance wasn’t possible, a 4 hour ambulance ride was the only option. On arrival in Glasgow, Alasdair’s heart stopped again he was connected to the ECMO machine and we were told he was on the highest support possible and the prognosis wasn’t good.

Three days later we were told the news were dreading. There was nothing more they could do for Alasdair. Our hearts were broken as the machines were switched off. Alasdair fell asleep in his Dads arms on the 23rd of July 2014.

Months later after all the genetic testing finally came back we were given the news that Alasdair had a very rare disease called Barth Syndrome. Barth Syndrome is a rare condition that only affects males. It is characterized by an enlarged heart, weakness in muscles and recurrent infections.

http://www.barthsyndrome.org.uk/

Over the next few months with support and thanks to friends, family & complete strangers we raised over £7000 in Alasdair memory.
We were absolutely delighted when Emma asked if she can do her first 10K for Barth Syndrome in memory of Alasdair. We can’t thank her enough for thinking of our boy; it means the world to us.

If you can spare any amount, no matter how small it would be gratefully received by the Barth Syndrome Trust in memory of a special little boy – Alasdair Gray.

Good luck Emma!