Alexis O'Mahony
In 2014, Joshua was born to his delighted parents. He was very small during the pregnancy and was born six weeks prematurely.
As the days and weeks went on, he wouldn’t grow or put on any weight. When Joshua was just five-months-old, he was referred to CHI at Temple Street. After various tests, Joshua’s condition remained unknown. Little did Joshua’s parents know that it would be years before they would have a diagnosis. “As a parent of an undiagnosed child, you have no one to compare them to and you don’t know what the future holds. It was a very daunting time.”– Joshua’s Mum, Laura
From the age of one, Joshua struggled even more, constantly being admitted to CHI at Temple Street with illnesses. It was so dangerous for him to get sick, and even the slightest illness would land Joshua in Hospital for weeks.
In 2016, two years later, Joshua’s sister, Olivia was born and she also seemed to have the same condition.
“Our life at this time was chaos, chaos is all I can describe it as. You see, when one child would get sick, the other would too. We were in and out of Hospital constantly and would spend about four months of each year in CHI at Temple Street. It was like our second home and the staff, our second family.” – Laura, Olivia and Joshua’s Mum
Time after time the family would be back in CHI at Temple Street, with both Joshua and Olivia undergoing a number of medical procedures over the years, having numerous MRIs and ports put in. The majority of their care were various interventions because they were so ill, just supporting them so that they were safe. Every year the family would spend December in hospital, hoping that they could be home in time for Christmas.
In 2018 after further DNA testing, Olivia and Joshua’s parents finally had an answer. Joshua was aged four and Olivia, aged two. Their diagnosis was a new diagnosis that hadn’t been named before, which is why it had taken so long to get to this point.
“Both of my children have a type of dwarfism. They are two of only ten people in the world with this condition. I cannot tell you the relief that we felt to have a diagnosis. As rare as their condition is, we finally had an answer and could look at how other children had been affected. And at this time, we learnt about an immunotherapy treatment which might help, as both children were still continuously ill.” – Laura, Olivia and Joshua’s Mum
Joshua and Olivia started to attend CHI at Crumlin for an immunoglobulin infusion. Attending every three weeks, it has been life-changing for the family.
“The staff in the Hospitals are just incredible. It’s like being amongst the most supportive of friends, they’ve been amazing to us, always there for a hug or cup of tea. And when I felt that the long days were dragging on, the music therapists, therapy dogs or a care assistant with a little gift would appear and would really brighten our day. As a parent, these distractions are so appreciated, and I know that your kindness is what makes these supports possible.” – Laura, Olivia and Joshua’s Mum
Olivia and Joshua are at the age now where Christmas is really magical, and are loving every minute of it! After all the years spent in hospital around Christmas time, Laura is looking forward to all being home together as a family, with no fear of them being sick or having to worry as much.
