He ended up in the hospital around 50 times by the time he turned two and was officially diagnosed at age seven
Donations are coming in from across the country and beyond to support the family of a young boy diagnosed with an incredibly rare disease as they raise money for a charity close to their hearts.
Jason Brady from Mountcharles, Co Donegal, was born 10 years ago on January 13 to parents Laura and Robbie, who initially thought their little boy was in perfect health. But as he grew older, mum Laura, who works for the Irish Defence Force, became concerned about her son.
“He picked up a lot of infections. He ended up in the hospital about 40 or 50 times by the time he turned two. The first time was from a head cold when he was four weeks old. He had an adverse reaction to all the vaccinations, so if he was given the MMR, he got measles from it. Or if he was given the meningitis vaccine, he actually got viral meningitis from it. His wee body couldn’t fight anything.” Laura said, speaking to RSVP Live.
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“He was also slow to walk and talk; there was definitely something wrong. I kept asking the hospital ‘Is there something wrong’ and they wouldn’t listen to me initially. They said it was just in my head, because, to look at Jason, he’s absolutely adorable, and even to this day, you wouldn’t know anything was wrong with him until he went to walk.
“He was referred to Temple Street when he was two, and the first thing the neurologist said to me was ‘You don’t get referred to Temple Street Children’s Hospital for nothing’ because I was worried we were wasting their time, because that’s the impression I got off all the other doctors, and that was such a relief to me, to know that someone actually believed me that there was a problem.
“We had no history of rare disease, so there were genetic bloods, four brain MRIs, a lumbar puncture, and a spinal tap; we did every test under the sun, and they couldn’t find out what was wrong with him.”
Laura said the doctor gave Jason a clinical diagnosis of Ataxia, which is a neurological condition that can cause uncoordinated, clumsy movement, poor balance, and slurred speech due to damage in the nervous system.
“We reached out to Ataxia Foundation Ireland, and started going to their events, which was very upsetting at first. It was a bit of a shock because we didn’t know what we were dealing with. After attending those events for over a year, I knew, in my heart and soul, that Jason hadn’t had the same Ataxia that the people in the group had. I knew we hadn’t gotten to the bottom of it.
“I went back to Temple Street and asked them to do more bloods, but they told me no, they had all the bloods done. Then I turned to Google and found Rare Ireland. They had a conference about three years ago with a geneticist who spoke about finding conditions in children. I spoke to the geneticist after, and he really changed our lives.
“We went private with Jason, which cost us over €6,000, and after the testing, he told us that Jason had spastic paraplegia 26. It’s mad how getting a diagnosis has given us as parents so much relief, because Jason was misdiagnosed for five whole years.
“A doctor had come from Dublin to Donegal to see Jason when he was about two and a half, and he told me that Jason might never walk or talk, and that he would be dead by the time he was ten. For five years, I was going to people’s funerals and crying my eyes out, thinking about burying my own son. I was grieving for my child. We have another child, Joshua, who is 14, and I was thinking, ‘Oh my God, how is Joshua going to cope with losing his brother?’ How am I going to survive this?”
Spastic paraplegia 26 is an extremely rare, incurable disease, and Jason is one of a handful of people in the world who have been diagnosed with it. The geneticist told the Brady family that people with the condition can live ‘relatively’ normal lives, and that Jason could live into his 60s or 70s.
The condition affects Jason’s lower body. From his core down, his muscles are very weak, and he has difficulty carrying his upper body: “The hardest part about Jason’s disease, for us, as parents, as he gets taller, or even grows a centimetre, it makes life so much harder because he has to learn how to carry that extra centimetre, which causes his walking to get worse.
“He also has a mild intellectual disability, but he goes to a mainstream school, and they absolutely love him there. He has a full-time SNA, and they are like best friends. At Christmas, the school included him in a play, and he came out on stage dressed as a wee sheep. I have never felt so proud in my whole life!”
Jason uses a walker at school so he can get around more easily, which Laura says has given him a lot of independence. He also has a wheelchair that the family uses for long distances, as he struggles to walk far. However, when he falls unwell, due to his weakened immune system, he finds it incredibly difficult to walk. “He has to crawl around the place as his body gets too weak.”
There has been great support for Jason in both the local Donegal community and from outside of it. The ten-year-old is a member of the Little Blue Heroes, making him an honorary Garda, which he takes very seriously. The family also have an assistance dog, a black Labrador called Nelly, who came from Cork’s Dogs For The Disabled.
“Jason is just so lovable, and he never stops talking now! It’s so important to never give up hope. He lives in his own world; he doesn’t see himself as any different from anyone else in his class. He says he walks differently, but he doesn’t see that as a problem.”
If there is one thing that Laura could tell other parents about advocating for their child, she said, “You need to be the voice for them.
“Doctors need to be accountable for what they tell parents. For five years, we were told the wrong stuff. You’re literally given a diagnosis, and you go home and Google it, because there are no other supports there, and it’s all bad stuff online, you never see the good stuff.”
Now, the family is looking forward to abseiling off Croke Park Stadium on Sunday to raise funds for Rare Ireland. “You’re literally in a harness coming down from a 150-foot drop,” Laura explained.
“We have over €10,000 raised, and we’re absolutely delighted.”
You can check out the Brady family’s fundraiser by clicking here.
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