Heartbreaking Appeal for Funding as Family Denied Life-Saving Drug

URGENT UPDATE: A family in Ireland is desperately appealing for funds after the HSE has refused to reimburse the cost of life-saving medication for their seriously ill baby. Toby Gavin, just seven weeks old, has been hospitalized for most of his short life due to the rare metabolic disorder, Propionic Acidaemia (PA).

His mother, Lucy Gavin, is now raising alarms about Toby’s critical need for carglumic acid, a drug essential for treating dangerous levels of ammonia in his blood. The cost? An eye-watering €4,000 per month if accessed privately. Without this medication, Lucy warns that Toby could spend three out of every four weeks in the hospital, severely impacting family life.

Lucy, who lives in Mullingar, explained that the only way to access this crucial medication is while Toby is at Children’s Health Ireland at Temple Street. Without it, the family faces dire consequences. “When Toby can’t break down these amino acids, they build up into a toxin called ammonia. This is very poisonous to the body and dangerous to the brain,” she said, highlighting the risk of seizures and irreversible brain damage.

The urgency of this situation cannot be overstated. Toby’s family has already initiated a GoFundMe campaign to cover his long-term treatment costs. They are also exploring clinical trials, but time is running out. “My son will need this drug for about a year to see any stabilization of his condition,” said Lucy, who worked as a pediatric nurse.

The family is also navigating the emotional toll. Lucy shared, “I feel like the newborn period has been stolen from us. We never got the opportunity to have those tiny newborn cuddles.” With Toby’s health precarious, Lucy has missed precious moments with her daughter, Ivy, who turns two in September. “She calls for her dad, and it breaks my heart,” Lucy lamented.

Adding to their distress, a letter from the HSE’s Primary Care Reimbursement Service confirmed that carglumic acid is not covered under existing community drug schemes. Toby’s medical team has reached out to the drug manufacturers for compassionate access but has yet to receive a response.

The family’s emotional struggles are compounded by the harrowing experiences in the hospital, where they were once told to prepare for the worst. “At one point, we were told to call his grandparents because they only do that when a child is dying,” Lucy recalled, expressing the fear that has enveloped them.

As the family continues to fight for Toby’s life, Lucy urges the public to support their GoFundMe campaign. “I don’t want to lose another three months of his life because he is stuck in the hospital. Making memories as a family is so important to us,” she pleaded.

The situation for the Gavin family is urgent and heartbreaking. For those wishing to support Toby’s treatment, donations can be made via their GoFundMe page. The clock is ticking, and every contribution counts in this desperate fight for survival.