Support Twin Babies with Rare Muscular Condition
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Hello everyone, let us introduce you to Tadhg and Oisín Relihan. Never in a million years could we have imagined we would be in the situation we find ourselves in today. Our little boys were born in July 2023. They were admitted to the neonatal unit in Cork after birth and within a few weeks they were diagnosed with an extremely rare life limiting muscular condition called myotubular myopathy. 1 in 50,000 boys are born with this condition. Our boys have been in hospital since birth, they're now 6 months old.
The pregnancy went well and the scans never showed any issues. We were scheduled for a C-section on the 21st of July 2023. The boys had decided they wanted to come a little early to suprise us and they certainly did.
We had an emergency section that night at cork university maternity hospital and they were born at 21:56 and 21:58. Here is where our worlds started to crumble. We were behind that curtain waiting to hear our babies cry for the first time but no cries came. We kept asking if they were ok 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.
Poor Oisín stopped breathing and needed to be resuscitated at just 4 days old. 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.
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. Tadhg and Oisín spent 5 months in the NICU in cork and have been in pediatrics in cork university hospital since December. They've never been home. We have been living in family accommodation called Bru Columbanus. Amidst all that's happened we have been able to make some magical memories. 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.
We are now reaching out to ask for help for their current and future care needs, which are and will continue to be very complex. We hope to bring them home to Clonmel in the future and when we do we will need to modify our home and fund for additional nursing support and equipment. People have been so good to us already and words could never describe how grateful we are. We appreciate anything and everything people can give. Thank you so much in advance.
Organizer
Danny Nicola Relihan
Organizer