Twins Tadhg and Oisín Relihan were born at CUH with a rare muscular condition.

Twins hope to go home

The parents of twin baby boys born with an extremely rare and life limiting condition are reaching out for help as they prepare to bring their children home for the first time.

Danny and Nicola Relihan, both originally from Cork, welcomed twins Tadhg and Oisín into the world in July of last year via an emergency C-section at CUH.

It was shortly after giving birth that Danny and Nicola, who now live in Clonmel, Tipperary, say their “worlds started to crumble”.

“We were behind that curtain waiting to hear our babies cry for the first time, but no cries came,” recalled the couple.

“We kept asking if they were okay, but we were not being told much. After 20 minutes of not knowing what was happening, they took our boys off to the neonatal ICU.”

Within a few weeks Tadhg and Oisín were diagnosed with myotubular myopathy, a rare muscular condition that occurs almost exclusively in males, affecting 1 in 50,000 newborn boys worldwide.

“Poor Oisín stopped breathing and needed to be resuscitated at just four days old,” said Danny and Nicola.

“We thought he wasn't going to make it. We had both boys baptised in the unit that night. Both boys have had several similar events since then.”

The twins remained in the neonatal unit at CUH for 5 months before being transferred to the paediatric ward in December.

With their lives now on hold and all focus on their babies’ health, Danny and Nicola decided to change their wedding plans and to get married at CUH with Tadhg and Oisín present.

“We have both had to stop working for the time being to stay in hospital and look after them,” they said.

“We were to get married in the summer of 2024 but when we found out about their condition we decided to cancel and get married with them in the NICU. Them being there was most important.”

Now, as Danny and Nicola prepare to bring their boys home to Clonmel for the first time, they are seeking support through a GoFundMe page to help with the costs of home modifications and ongoing complex medical needs for Tadhg and Oisín.

Within a few days of being set up, the page surpassed its initial target of €20,000.

They said: “We have both had to stop working for the time being to stay in hospital and look after them. Once we get home, we will become full-time carers for our two boys. The past 6 months have been the hardest time of our lives.”

The couple say that despite how tough the past months have been, they have still managed to make some “magical memories” with Tadhg and Oisín.

To make a donation to help the Relihan family in the difficult times ahead, visit gofundme.com/f/support-twin-babies-with-rare-muscular-condition.