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Jack Tuesday the 23rd April 2007 was the most exciting day I have ever had. My big sister went into labour. Mum and I were in the hospital for what felt like hours on end till we had to leave. We picked up my little sister and travelled to Cameron Toll to prepare for the new arrival, that's when on the 24th of April 2007 the phone call came through that my baby nephew was born weighing 9lb 12oz they had named him Jack Adam Malcolm. Jack was born with a hernia so remained in the special care unit for a few days while the doctors popped it back into place. When he was allowed home he very quickly became the 'top dog' of the family and developed a very cheeky 'innocent looking' smile. A few months passed in absolute bliss, everyone loved entertaining, tending to, and enjoyed having baby Jack around and nothing could ruin our perfect little family. But that was not Gods plan. When Jack was 9 months we started noticing that when he tried to sit up he had a slight bend in his back, almost as if his spine had a 'kink' in it. Doctors failed to identify the cause and we just had to make do with their saying he was just pigeon-chested. All his other signs were good he could see, hear and even pick up small objects very well for his age. He continued to develop well, he began to roll onto his front and back again, he also started to want to feed himself with a spoon and he started to grow some front teeth, but he never grew out of the lump on his back. Finally tests came back with some results we didn't want to hear. Jack had a genetic condition called mucopolysaccharide disease, hurlers' type 1 this turned out to be the most aggressive form of the disease, which means that he was missing an enzyme called alpha-L-iduronidase which should have the job of cutting up the mucopolysaccharides called dermatan and heparin sulphate. Since this 'cutting up' process does not take place the sugars build up and cause to stop developing and effectively go backwards. We were told that without treatment Jack would die before he hit the age of 10. We were informed that the chance that two people who both carried the hurlers gene would meet up was 1 in 125 000 people, but it had happened to our family. We also learnt that it was a 1 in 4 chance that they would have a baby with the disease so luck was not on our side. At 11 months old Jack started enzyme replacement to give him the enzyme he was missing this lasted for a period of 3 months and was given to him through a Hickman line that went from his neck through a major blood vessel into his heart so he could receive the enzyme directly. This brought with it an extra responsibility for us and especially his mum and dad as they were in charge of cleaning and changing the tape and dressing, which kept the line in place, almost daily. It was a hard time and we struggled to see through the dark clouds that hovered above us but we weren't expecting what happened next. Jack deteriorated the enzyme wasn't working and we learnt that he would have to have a bone marrow transplant so had to be admitted to Yorkhill Children's Hospital in Glasgow. They wouldn't test his mum or dad to see if they were a match as they both carried the enzyme defect so we had to wait for a donor with the same bone marrow as Jack. Eventually they found one and they went ahead with the operation. It was a success all we had to do now was wait to see if his body accepted it. After a couple of months the results were back and yes the bone marrow was working properly. Jack had by this time lost the majority of his beautiful strawberry blonde hair, still had to be fed through a tube and was on all sorts of medication to keep him alive but things were looking up.

After this brief period of hope that wrapped itself round us Jack had to get transferred back to the Intensive Care Unit (ITU) as he developed an infection.

Jack was in and out of ITU again and again with countless infections and our hope was raised and dashed with each trip.