A Donegal couple are preparing to take a giant leap on 8th March to support families living with rare diseases.
Laura Brady and her partner Robbie Barlow from Mountcharles will abseil Croke Park to raise funds and awareness for Rare Ireland, a charity supporting families living with rare diseases.
Their challenge is inspired by their youngest son Jason, aged 10, who is one of just six people in the world diagnosed with an ultra-rare condition known as spastic paraplegia 26.
Jason was seven years old when he finally received a diagnosis after years of unanswered questions.
The first signs of his disability came when he was slow to reach key developmental milestones such as walking and talking.
While he was initially diagnosed with ataxia, Jason’s parents followed their instincts and pushed for further testing.
His eventual diagnosis may never have come without them attending a Rare Ireland conference, where they heard a talk from a UK doctor who specialises in genetic disorders. They put Jason through more testing which finally led to a definitive diagnosis.
Due to the extreme rarity of spastic paraplegia 26, his parents were once again faced with a lack of information and had to turn to online communities for guidance.
The family eventually made contact with a teenage girl in the United States who also has the condition, and seeing her progress has brought hope. Recently, Laura saw a post of the girl as a cheerleader, with her walker sitting just behind her. “She’s coming on brilliant,” Laura said. “Seeing her would fill your heart with hope.”
Jason experiences weakness from his core down and he is frequently admitted to hospital as his immune system struggles to fight infections. “He can’t fight things like a normal child,” Laura explained.
The family say they never feel sorry for themselves and instead try to make every experience as positive as possible.
Because of this and the wonderful people around him, Jason is a happy and curious lad. He loves learning through his iPad, enjoys his physio and occupational therapy and gets a thrill (and fame!) from being an Honorary Garda with the Little Blue Heroes programme. Jason is never short of support, with big brother Joshua always watching out for him and his assistance dog Nellie by his side.
Jason Brady, 10, is aided by a walker and sometimes a wheelchair due to weakness in his legs.
At his school, Scoil an Linbh Íosa in Killymard, Laura and Robbie credit Principal Ms Reid and his teacher Ms Downey who go the extra mile to help Jason reach his potential and feel valued. He has a special bond with his SNA Frances, who he calls his best friend. “And he’d buy and sell anyone else he meets,” Robbie laughs.
“The bond he has with them, it would do your heart so good,” Laura said about the inclusion and support Jason has at school.
Jason is a superhero in his own right
Jason’s parents are passionate about the need for better support for families navigating rare diagnoses, particularly genetic counselling.
Parents are often left alone to process devastating news, says Laura.
“It’s like a grieving process,” Laura said. “Instead of googling everything, there should be someone to talk you through it. Because a child is so rare, and some can be non-verbal, you don’t know what you can do to help them.
“And when doctors are disagreeing on treatments, it’s an awkward place to be.”
As much as they have gained life-changing information and support from Rare Ireland, the Bradys are determined to give back, connecting with other parents and sharing their story. Laura has also spoken at one of the charity’s national conferences.
Laura and Jason, who is an Honorary Garda with the Little Blue Heroes Programme
Laura has a fear of heights, but that has not stopped her and Robbie from stepping up to support the charity that made such a difference to their own family.
Robbie is a retired sergeant with the Defence Forces, while Laura continues to serve as a soldier. Laura says the Defence Forces have been a fantastic place to work and incredibly supportive of their family. Both are used to facing challenges head-on and getting on with the task at hand, but leaning over the edge of the Croke Park roof is a very different test, particularly for Laura.
Since sharing Jason’s story, Laura and Robbie have already helped guide other parents towards Rare Ireland and the support it offers. They have been overwhelmed by the flood of donations received.
“I’ve never understood the kindness of strangers until now,” Laura said. “People we don’t know are donating, sending messages, asking how they can help. The kindness behind people’s messages is unbelievable.”
All funds raised will support Rare Ireland in their work advocating for families affected by rare conditions, as well as subsidising therapies, providing counselling, and hosting an annual conference. Find out more at rareireland.ie
If you would like to support Laura and Robbie’s Croke Park abseil in aid of Rare Ireland, you can find donation details here: https://www.idonate.ie/fundraiser/laurabrady3
Donegal parents brave new heights for their little hero was last modified: February 22nd, 2026 by Rachel McLaughlin
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