BiographyI first noticed Caelan had issues when he was around 8 months old. I noticed that when he was supposed to be doing things other babies were doing he would struggle. For instance when he would roll over he couldn’t pull his arm out that he had rolled onto. When he’d sit up in his sit me up seat his head would always be resting on either shoulder. He always seemed to get sick often with colds and chest infections which resulted in a lot of hospital admissions from an early age.
I was so persistent on taking Caelan to the GP to find out what was “wrong” with my baby but each time I was told I was just a young paranoid first time mum!
As the months went by we had multiple GP visits and finally lots of hospital visits to do some testing on Caelan, as the older he got the more his symptoms really began to show. He was having all these tests under Alder Hey Children’s hospital who eventually told me at 15 months that there was nothing wrong with him, that he was a slow baby and will eventually catch up to everyone on his own time. He had no muscle tone whatsoever by this stage. We were then discharged.
A few weeks later I received a phone call from Manchester Children’s Hospital where they told me the devastating news that my 16 month old baby boy was poorly, that in fact he had a terminal illness and we had to be escorted to Manchester right away via ambulance that day for more tests. I was told it would be a lengthy stay and to pack enough stuff for the both of us!
We never left that hospital for almost four years… four years of moving from ward to ward, 4 years of being poked, prodded, operated on, put into comas, brought out of comas, told he may not make it each and every time. The thing is Caelan was strong. He wasn’t like the other children who had this same diagnosis. I was told he should never have lived past 12months undiagnosed with no treatment, he made it to 16months!! Once he was diagnosed Caelan started weekly ERT infusions to correct his enlarged heart. It worked and after some time they then moved to bi weekly treatments! Those treatments have kept him alive to this day.
In 2019 I enrolled Caelan into a clinical trial for a new drug for Pompe disease, I was one of only a tiny selected few world wide. Little did we know that this would be the best decision we would ever make, it has improved his quality of life so much and he has never been stronger! (This meant that we had to spend a whole day in the hospital every other week until this drug passed clinical trials). We were told that even if it did well that it might not even pass the funding but we took that risk anyway because we feel like the benefits of it would be substantial! We were right! The improvements we started to notice in Caelan were phenomenal, he seemed to be a lot more capable of doing things that he really once struggled with! The clinical trial lasted around two years. It was then approved by the government and Caelan has had them at home or in school every two weeks done by nurses.
Caelan is almost 10 years old now, he has gone through so much in his short life but he has turned out to be the most incredible little boy. He has made such an imprint on the world and he will continue to do so for as long as he gets to stay here!
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