A Mullingar family say they are overcome with emotion after a life-saving drug was approved for their newborn baby following a public appeal.
Lucy, along with her husband, earlier this week appealed for the Health Service Executive (HSE) to suapply funding for carglumic acid to treat Propionic Acidaemia (PA), a rare inherited metabolic disorder which little Toby was diagnoded with.
The family had been locked in a battle with the HSE to supply Toby with the treatment, adding that they feared heir little boy woild be left with brain damage if the €4,000 a month drug is not made available for use at home.
Lucy said this week: “We are highlighting Toby’s story as we are basically trying to get a foot in the door,” Lucy told Gript. “We are hoping that by raising awareness, we might be able to change this decision, and get Toby this amazing drug, which he so badly needs.”
“With the condition being so rare, what Temple Street have told us that there is a roughly one in 150,000 chance of having this condition. The reason the HSE is not willing to put this drug on the reimbursement scheme is because it’s such a rare condition and such a rare drug. But to us, it’s really just pure discrimination because it’s not a common condition. It’s not a common drug, and so they don’t think it’s important.
“The Government spent more than €300,000 on a bike shelter. It would have needed to have been made out of gold to justify the cost, but eyelids weren’t even batted. And yet, my child’s medication is such a problem; the HSE won’t fund life-saving medication for a small baby who needs it. It would really make you question their priorities,” Lucy said.
Speaking To Gript in an update on Friday evening, Toby’s mum Lucy said that it would be impossible to thank all of those who supported the family in the last few days.
Earlier today, the Mullingar mum of two received correspondence to say that an application for reimbursement support for the drug had been approved.
“I am honestly overcome with emotion to be able to say I received correspondence from the PCRS this evening that Toby’s application for Carbaglu has now been approved,” she said.
“Myself and Niall Gavin cannot thank every single person enough who liked , shared and supported our post.
“This takes a massive weight off our shoulders that we can safely have our little boy at home.
“We have overcome one hurdle now to get Toby to Manchester or London to get his trial and liver transplant.
“We won’t be able to do either of these without everyone’s help on our Go Fund me. I can’t thank people enough for the support and generosity shown to us so far. I could just cry. Even Toby is smiling!”
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