Rare Disease Day: The inspirational Donegal boy who is one of only six in the world

A 10-year-old Donegal boy still wears the same smile that helped his mother and family through the hardest of times. 

Jason Brady has had frequent hospital visits, operations and tests as a result of having a limb disorder so rare that only five other people in the world possess it. 

His mother, Laura, has decided to share his story for the first time on Rare Disease Day, February 28 - a globally coordinated movement in which events, campaigns, and initiatives are organised to raise awareness about rare diseases. 

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Hereditary spastic paraplegia 26 (HSP 26) is a complex and rare neurodegenerative disorder characterised by progressive lower limb spasticity and weakness.  A condition is considered rare if it affects fewer than one in every 2,000 people. HSP 26 affects only six people worldwide, one of whom is Jason.

“It means he can walk, but he is wobbly,” Laura tells Donegal Live. “He struggles with steps or ramps and needs to have some kind of support.”

Jason uses a walker to help with balance

Up until the age of two, he was admitted to the hospital approximately 40 times. He was reacting adversely to vaccinations and struggling to fight infections, which was attributed to a weakened immune system. 

At 18 months, Jason was progressing slowly with walking and talking. He was referred to Temple Street Children’s Hospital in Dublin. Jason, by two, was diagnosed with ataxia - a group of rare genetic disorders affecting coordination, sight, speech, hearing or balance. 

Laura and her partner Robbie began attending Ataxia Foundation Ireland events, giving the family the chance to meet others in similar circumstances. 

“They were a fabulous community,” Laura says. “They made us feel so welcome. From attending events, I could see that people were a little bit different to Jason. As the years passed, I wasn't happy that this was a correct diagnosis.  A lot of them were in wheelchairs. Jason could walk.”

Lacking confidence in the diagnosis, Laura stumbled upon Rare Ireland, a charity dedicated to supporting families with rare diseases. At their charity ball in Athlone, Laura met someone who she would later say “totally changed our lives.”

Jason’s condition was diagnosed by Dr Anand Saggar, a creative Consultant of Clinical Genetics and Founder of the International Gene Clinic, following blood tests and a consultation.

“They found the HSP 26,” Laura adds.  “It was a relief and a shock. Jason had been misdiagnosed previously. It made us wonder. Could we have been helping him more? Could we have been doing things differently?”

Hereditary spastic paraplegia is the general term for a group of rare disorders that cause weakness in the lower limb muscles. Jason’s condition affects his movement and balance and he receives physio, occupational and speech therapy to support his development. 

The distinctive feature of Jason’s condition is his number, 26. Jason still has ataxia, but it is a result of the HSP 26. 

“The cruel part about Jason’s disease is that as he grows, it makes it harder to walk,” Laursa adds. “Now, we're hopeful that he will always walk, and we'll have a wheelchair for long distances. 

“Going forward, we are hoping it doesn’t get worse. For us as parents, when he was smaller, we didn’t know what we were dealing with; it was a lot of worry.” 

Jason lives in Mountcharles with his mum, dad and older brother, Joshua, who is 14. Another member of the family is Nellie, who is specially trained by Irish Dogs for the Disabled, a Cork-based charity. Nellie supports Jason while he walks and can sense how he is feeling. 

Jason and Nellie love spending time together

“Nellie has been instrumental since we got her,” Laura adds. “She is very in tune with him and emotionally, she's fantastic. At home, he might have been coming down with something, and we didn't realise it. Nellie would be over hugging into him and protecting him.” 

In 2024, he joined the Little Blue Heroes and became an Honorary Garda. The foundation supports children with serious illnesses and empowers their lives through community engagement. 

“It has been a whole new lease on life since we joined,” Laura adds. “When he hears there's an event, he gets so excited because he gets to wear his uniform.”

Along with his garda buddy Yvonne Carolan, Jason switched on the Christmas lights in Donegal Town, while all his friends chanted his name. Yvonne and Jason have a great friendship and he often gets excited to see her. 

Little Blue Hero Jason on his Garda bike

A third-class pupil at Scoil an Linbh Íosa, Killymard, Jason has a full-time Special Needs Assistant (SNA), Francis Gallagher, who supports him physically and socially. 

“If Jason hadn’t got an SNA, he wouldn't be able to go to school,” Laura explains. “The unique bond they have is amazing. His school is fantastic. It would do your heart so good to be there.  Every day, he wants to go to school, even when he's sick; he wants to go to school, he absolutely loves school.”

Although Jason has a mild learning disability as well as a physical disability, he has been well-supported in school by all of his teachers. His current teacher, Miss Sinead Downey, however, “goes above and beyond,” Laura says. 

“She just wants to make Jason better, better, better. It is the first time we have really seen a teacher that’s willing to fight for children and it's absolutely fantastic.”

Any initial doubts Laura had about sending Jason to mainstream school have been quelled. Last Christmas, at the school’s carol service, the children were singing, and at the end, Jason came out dressed as a sheep, keen to play his part alongside his friends.  Another heartwarming example of the bond between his friends was when, on Jason’s birthday, his friends tied balloons to his walker to mark the big day. 

“When I went to the yard, he was flying about the place with two balloons,” Laura says with a proud smile, “It was lovely, he's so included. “Jason has a lovely personality, so lovable."

Jason dressed as a sheep at the Christmas play

Jason’s parents are Taking the Leap for Rare Ireland on Sunday, March 8. Despite having a fear of heights, Laura and Robbie are partaking in an abseil down Croke Park to fundraise for the charity. 

Laura is a Private in the Irish Defence Forces and is stationed at Finner, approaching 21 years of service.

“The people of Donegal have really got behind us,” Laura says of the charity drive. “I also credit social media pages that have shared our fundraiser and we have the support of the army, too.” 

Laura wants to highlight the importance of advocating for your child and believing your gut instinct if a diagnosis doesn’t seem to fit. 

“If parents believe their child has been misdiagnosed, do question doctors and get more bloods done, because in our case, it's a massive relief now.” Laura continues. “Even though HSP is rare and it is a bad disease, at least we know what we're dealing with.

“People are waiting for years on diagnosis. People are getting the wrong diagnosis. There are people wondering, has their child got the right one? 

“If there are people in Donegal who believe they might have a rare disease, they should look up Rare Ireland. “So the whole reason for my joining and fundraising is because I think for parents out there, you have to be an advocate for your child.  You have to be their voice, and you have to fight for them.”