Relief for Gavin family as HSE approves drug for Toby
Shane King
Just a week after the Westmeath Examiner shared the story of a local family’s urgent plea for help, Lucy and Niall Gavin have received life-changing news that the HSE has approved reimbursement for Carbaglu, the vital medication their son Toby needs to survive.
“I am honestly overcome with emotion,” Lucy said in a heartfelt message to supporters on Friday evening. “I received correspondence from the PCRS this evening that Toby’s application for Carbaglu has now been approved.”
The news marks a monumental victory in the Gavin family’s ongoing battle to care for their little boy, who suffers from a rare metabolic condition that requires round-the-clock attention and specialist treatment. Without Carbaglu, Toby’s condition placed him at severe risk, yet until now, the cost of the drug placed it out of reach.
“This takes a massive weight off our shoulders,” Lucy said. “We can now safely have our little boy at home.”
The family expressed deep gratitude to the community, whose support online helped amplify their story and push their case into the national spotlight. Their GoFundMe campaign has also received generous donations following the public appeal raising €30,000 as of Sunday evening last.
While the approval of Carbaglu is a crucial milestone, Toby’s health remains a concern.
“We have overcome one hurdle with this great news. Now we have to get Toby to Manchester or London for his clinical trial and liver transplant,” Lucy told the Examiner. “We won’t be able to do either of those without everyone’s help on our GoFundMe. I can’t thank people enough for the support and generosity shown to us so far. I could just cry. Even Toby is smiling!”
Speaking to the Westmeath Examiner on Monday, Teachta Clarke said: “Clearly this young boy has a profound medical need and no family should be in the position whereby they need to call on TDs to intervene on their behalf for something that their own consultant had prescribed, had recommended, and had provided the family with to allow Toby to be able to come home from hospital.
“Obviously I’m delighted, genuinely, I am absolutely over the moon. He has an awful long road ahead of him, little Toby, but hopefully this is the first step.”
Minister Peter Burke had also had contact from Lucy, Toby’s mother, and he been working on their behalf. He said: “I am relived that common sense has prevailed and that Carbaglu has been approved for reimbursement. As a parent, I can’t imagine the stress and anxious wait that Toby’s parents had to endure. It’s one of the great challenges of health policy accessing medicines to rare conditions and we need to keep making improvements in the area.
“I wish Toby and his family the very best in the time ahead, we are all available to help.”
The Gavin family continues to raise funds to cover travel, accommodation, and medical expenses associated with the next phase of Toby’s care abroad. The upcoming clinical trial and transplant offer hope for a more stable future for the toddler.
Toby’s fight is far from over, but this milestone, thanks to relentless parental advocacy and public compassion, he can finally receive the treatment he needs.
Fundraiser in Clarkes
Friends of the Gavin family are hosting a fundraising event on Friday September 19 in Clarkes Bar, Mullingar.
On the Facebook page they write: ‘This event is an opportunity to come together with Lucy and Niall.
On the night there will be live performances from talented local musicians, a raffle with a variety of exciting prizes generously donated by local businesses, and karaoke.’
Tickets (€10) are on sale via Eventbrite and at the door on the night.
Those unable to attend but would still like to support the family can make contributions Eventbrite; search for ‘Benefit night for Toby Gavin’.