James’ Journey: James is a four-year-old boy with a severe mutation who needs funds to help make a difference in his life. Pictured: James Carroll.
James’ Journey: Help Our Hero
By I Love Limerick Correspondent Kate Devaney
James is a four-year-old boy whose family is reaching out to the public to ask for help, a simple task that James will most likely never be able to do himself.
James was born with a significant mutation, impacting every aspect of his life. It affects him both mentally and physically and he will depend on his parents for everything he needs for the rest of his life, as he is expected to never walk, talk, sit up or eat independently.
James was diagnosed in November 2018 with a mutation of the gene CACNA1G causing spinocerebellar ataxia type 42. This has had a huge impact on James and his whole family. His eyesight is also severely affected and he suffers from tummy issues, pains in his legs and agitation.
Louise, James’ Mother and full-time Carer, said, “It has been very difficult for us as from when I was pregnant we had so many hopes and dreams for James as every parent does. We still have lots of dreams for him, just a lot different from what we first thought. We have had to change how and when we do things, such as I can’t just run to the shop with James or pop out to the clothesline”.
James’ Journey: James’ family are reaching out to the public to make James’ living conditions more accessible.
James started showing symptoms from a very young age, having seizures at 4 weeks old and never meeting any of his significant milestones. Louise and her husband were told by doctors that he had severe global developmental delay and he would reach certain milestones, just a bit later than when he was expected to. These milestones were never met and that is when James’ parents reached out to St Joseph’s Foundation in Charleville when James was 7 months old.
Louise said, “We really needed some help and guidance. I have always been so grateful to them for everything they have done for James and for us”.
James was finally diagnosed at age 3 and while Lousie describes finally understanding his condition as an “unbelievable feeling”, there is still a lot unknown about his condition. With no treatment or cure available for his condition, the only thing they can do is try to manage the issues that come along with his condition.
James is the only child in Ireland, the UK or in Europe that the Carroll family can find with his rare condition. James’s GP and paediatrician had never heard of the condition, and while the Carroll family is extremely grateful to the Jack and Jill foundation, who give them time to do things like groceries and spend quality time together, they do not qualify for any HSE support.
Louise and William brought in a specialist who surveyed their house and listed out what adjustments need to be made, such as wider doorways and remodelling much of the house, including the kitchen. They are hoping to make the bathroom large enough for a wheelchair, with an accessible shower. They also hope to extend their living area so James can be more involved in everyday life, along with a new wheelchair and equipment that will be essential in the future.
These vital funds will completely transform James’s everyday life. He is a smiley, energetic child, who loves being around other people and taking part. The only way he can continue to do that is if the renovations happen, giving him the space he needs to grow and develop in his own way.
Louise said, “Yes our lives are difficult and medically we cannot cure James’s condition but we cannot express how much of a difference these renovations will make to our gorgeous boy. James is great fun, he loves to play and be tickled, he loves when you make a fuss of him and being part of what is going on around him. Words cannot express how thankful we are for the generosity shown to our family already. We are blown away by the donations, the kind wishes and the offers of help.”
To donate to James and his family, please click here.
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