Family appeal for funds after HSE refuses to reimburse cost of baby's life-saving treatment
At just seven weeks old, Lucy Gavin's son Toby has spent most of his life to date in hospital. Toby suffers from the rare condition, Propionic Acidaemia (PA), a metabolic disorder impacting the protein pathway.
It has left the infant's life hanging in the balance on numerous occasions. Its destruction on his tiny body is such that the family is already in the process of trying to secure a liver transplant for him through King's College Hospital in London.
Lucy says Toby needs carglumic acid, which is sold under the brand name Carbaglu, for the treatment of hyperammonaemia, characterised by abnormally high levels of ammonia in the blood.
Lucy, who lives in Mullingar, said the only way they can gain access to the drug is while Toby is staying in the Children's Health Ireland hospital at Temple Street. Without personal access to carglumic acid, the family is unable to treat the condition at home.
Consequently, Lucy says she now barely sees her husband Niall and has missed out on precious time with her daughter Ivy who is set to turn two in September.
Since the family is unable to treat Toby's Propionic Acidaemia at home Lucy (left) now barely sees her husband Niall (second from right) and has missed out on precious time with her daughter Ivy (right).
She added that without the drug, they will have to spend three out of every four weeks in hospital with Toby. Toby's medication comes in at €4,000 a month if accessed privately.
Lucy said her son will need this for about a year to see any kind of stabilisation of his condition. She has been told it will likely be at least two years before he can undergo a liver transplant operation.
Meanwhile, the family is also exploring clinical trials. A GoFundMe campaign has been set up by Toby's family and friends to cover his long-term treatment costs.
A letter from the HSE's Primary Care Reimbursement Service (PCRS) informed Toby's doctor that carglumic acid is not reimbursed under community drug schemes or arrangements.
The medical team has since reached out to manufacturers of the medication to see if they can access it on compassionate grounds. However, they are yet to receive a response.
Lucy explained the dangers of the condition.
'When Toby can't break down these amino acids, they just build up into a toxin called ammonia. Basically, this is very poisonous to the body and really dangerous to the brain.
It causes seizures, which obviously we've seen at home because the ammonia had reached a really high level. It can also cause brain damage, which is irreversible.
"With this comes outcomes like cerebral palsy and difficulties walking and talking.'
Toby spent his first few weeks after birth battling to stay alive.
'I feel like the newborn period has been stolen from us. We never got the opportunity to have the tiny newborn cuddles. This is because for the first week and a half he was stuck to a ventilator in an incubator.
"We couldn't touch him. We never even got to hold him when he was in intensive care. He had 16 different IV medications running through him and a line in his neck that went to his heart. This had to be done because they needed to keep him alive.
"However, I don't want to needlessly miss out on another three months of his life because he is stuck in hospital. Making memories as a family is so important to us.'
Lucy, who worked as a paediatric nurse, said she never believed her family would be in this situation.
At one point in the hospital we were told to ring Toby's grandparents to come and see him. It scared me so much because they only really do that when a child is dying. Another person mentioned about getting him baptised.
She spoke about how the situation is impacting their daughter Ivy.
'The other night I couldn't help but cry because I was trying to put our little girl to bed. She was calling down for Niall and he wasn't there.
"She was bawling crying. I started crying too, because there is no way to explain this to a two-year-old. When she comes down to the sitting room in the morning, the first thing she does is peek into the Moses basket, but he's not there.'
To donate to Toby's treatment fund or find out more visit their Gofundme page.
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