Our Story
Our story began in March 2007 when our second child Joshua-Kyle became increasingly unwell. When he was born four months earlier in November 2006 he seemed like a normal healthy baby, and we couldn’t have been happier already having a three year old girl.
Joshua-Kyle never fed well and was often sick after feeds, but this was put down to bad reflux, a condition his big sister had suffered from. Things didn’t improve, we noticed he didn’t have much strength in his neck muscles, was quite floppy and his weight wasn’t improving. After several visits to the doctor he was admitted to the Ulster Hospital as a precaution for dehydration and was later diagnosed as failure to thrive. We were assured he would be fine as many babies suffer from this condition, but the following two weeks left us in no doubt that there was something seriously wrong. Joshua-Kyle was transferred to the Royal Belfast Hospital for Sick Children, where after after many gruelling tests it was discovered that Joshua-Kyle was suffering from a rare genetic condition, although the doctors were unsure of the exact type.
We were given the news no parents ever want to hear, that our precious son was going to be life limited and to expect the very worst. These were some of the darkest days of our lives and we felt so helpless and frustrated, although we knew we had to try and stay strong for our son.
We were spending every day at the hospital with Joshua-Kyle and then home to our little girl at night as she was struggling without her mummy, daddy and little brother. We were also researching possible genetic conditions on the internet to see if we could get specialised help or take Joshua-Kyle somewhere, anything to try and save our son.
Eventually we were told that he was suffering from a mitochondrial disorder, an illness very rare and with no cure. By this stage Joshua-Kyle was being fed through an naso -gastric tube as he had lost his swallow, he couldn’t hold his head up due to underdeveloped muscles and he was quite weak, but mentally he was very aware of what was going on around him. His beautiful smile and laugh were heart warming and contagious and it was these and his fighting qualities that kept us going as well as the frequent hugs and kisses.
After three weeks in the Royal and showing some signs of improvement we returned to the Ulster hospital, where we got Joshua-Kyle home on day release which was priceless to us and our whole family.
Unfortunately Joshua-Kyle’s condition worsened again and he was rushed to paediatric intensive care unit where he passed away a week later after a very long and brave fight. Our baby boy was just nine months old and had been in hospital for five months. A year later we found out he had been suffering from a condition called complex 4 deficiency and not a mitochondrial disorder, we are still in touch with the genetics team to try and learn more.
The quality time we had with Joshua-Kyle will always be cherished and the memories can never be taken away but while in hospital we noticed there were a lack of facilities and equipment for babies and children with special needs. Like so many other terminally ill children Joshua-Kyle needed suitable toys as he had little strength but needed to be stimulated as his mind was very active and alert. We had no seating for him, a simple bean bag could have made a big difference to him, obviously we didnt want to leave him to go shopping for these things as every minute with him was so precious. As a result the Joshua-Kyle Trust was set up to try and help other families of sick babies and children who find themselves in similar circumstances, by helping we wish to provide a better quality of life, improve comfort and hopefully bring some smiles.
Gary and Jacquie-Lee Rea
