Nial was born at 30 weeks. He spent the first 12 weeks in special care. Nial was tube fed, but unable to grow. He then had a peg placed at 2 years old. At this time he had a sibling diagnosed with mitochondrial disease and began genetic testing. Soon after the peg Nial's body began to shut down, his gut and bowels were becoming damaged and the only course of action left was TPN. He was unable to come off TPN from 24hrs as he was found that his blood sugars drop within 2 mins to a dangerous level. TPN can affect/will affect his organs, this might take many years but there is no further treatment available.
He hasn’t grown in weight in the pass two years and is currently in and out of hospital with infections as he hasn’t the strength to fight minor illness. He has had sepsis many times which has damaged his body further. His kidneys are affected with kidney stones and reflux which is damaging them further and he needs help to empty his bladder.
He can’t talk, walk or sit unaided and there is no cure just plenty of love and making memories with his family around him. Nial this month has just had another month stay in hospital due to a kidney infection that reached his TPN line and turned to sepsis. His little body has been through more than any adult would go through, constantly having bloods daily, all medication is iv and he's constantly attached to a machine. He is unable to attend school or visit places in case of infection and leads a very settled life. Having a blanket that could wrap security around him would be a beautiful item.