Mansfield couple fundraising in memory of late son who died from ‘rare’ genetic condition

Just two weeks after the birth of Mac on May 5, 2023, Shannon, 30, and Niall Quinn, 29, were told they would have to turn off their “gorgeous” son’s life support.

Baby Mac died on May 19 – two days after his ventilation was withdrawn.

The couple said it was the “hardest thing” they've ever done and said the whole ordeal was every parent's worst nightmare.

The couple praised the staff at King’s Mill Hospital for their support – but said they began to worry when Mac was discharged while struggling to feed and not crying.

It was only when they returned for a check-up the next day that doctors realised Mac’s condition was deteriorating.

After days of tests, Niall, who works for East Midlands Ambulance Service, said they had been told Mac had a rare genetic condition called Nonketotic Hyperglycinemia (NKH) and that both he and wife Shannon were carriers.

Niall said Mac was then admitted to King’s Mill Hospital and after a short time on the neonatal ward, he was then moved to Queen’s Medical Centre for specialist care and a ventilator as he was unable to breathe for himself due to the condition.

Niall said: “We were then faced with the heartbreaking news that no parent should ever have to face.”

The couple said they decided to take Mac back to King’s Mill Hospital for his final days.

Following the loss of their “gorgeous” son, Niall said he knew he wanted to raise money for the NHS staff who went “above and beyond” for his family.

In light of the first anniversary of Mac’s death, Niall, with the help of friend Josh and brother-in-law Ben, will take on the Three Peaks challenge – climbing Snowdon, Ben Nevis and Scafell Pike within 24 hours, raising funds to be split between King’s Mill Neonatal unit, King’s Mill children's ward and Queen’s Medical Centre children’s paediatric intensive care unit.

Readers can make a donation at https://gofund.me/4e1d636b

Niall added: “We want to supply the wards with essential items to help families going through similar situations.

“The support given to us during the worst time of our lives will never be forgotten.”