A dad whose baby son lived for just 30 days says it was a ‘pleasure and an honour’ to raise vital funds for East Anglia’s Children’s Hospices (EACH) by completing the Norfolk Marathon.
Will Nixon wanted to show his support as little Otis had Spinal Muscular Atrophy (SMA) Type 0 – the rarest and most severe form of the condition.
He was born at the Norfolk and Norwich Hospital in January 2020 and died just under a month later at The Nook – EACH’s base in Framingham Earl.
Will, wife Jesse and son Marlo, now eight, were able to spend three days together at the hospice, including taking precious hand and foot casts of Otis.
The family have also received bereavement support since he died.
Will says he will be forever grateful and was determined to give something back by completing the recent marathon, raising more than £1,000.
The event started and finished in Cromer before winding through surrounding towns and villages, and he completed the 26.2 miles in three hours and 53 minutes.
“It was the hardest thing I’ve ever done, and I didn’t appreciate how much of a mental battle the second half would be,” said Will, who lives in Beccles.
“There was a point where I turned a corner and could see a long, steady incline ahead of me. It felt like there was no end to it, which was incredibly tough.
“Having said that, it was an amazing experience overall, and I was an emotional wreck at the finish line.
“So many feelings came rushing to the surface, and I proudly held up a picture of Otis.
“Jesse, our sons and my parents were there and I remember slumping into Marlo’s chest. I gripped him and sobbed, and he patted me on the back. It was very sweet and exactly what I needed.
“It was a culmination of everything that had happened on the day as well as beforehand, and I felt so proud to be supporting EACH.”
There had been concerns about reduced movement during Jesse’s pregnancy, and he was eventually delivered by emergency Caesarean section.
He immediately needed help to breathe and was rushed to the hospital’s Neonatal Intensive Care Unit (NICU), where he was soon diagnosed with SMA Type 0.
Otis remained on ventilation for 30 days, at which point Will and Jesse received the devastating news that there was nothing more the medical team could do.
Their son’s condition was not going to improve, and they were referred to EACH and The Nook.
Otis was transferred to the hospice, where his breathing apparatus was removed.
“It meant we were able to hold him without his wires or feeding tubes, which we hadn’t been able to do up to that point,” said Will, 33.
“That’s when he passed away, in our arms.
“For the next three days, we stayed at the hospice and experienced such incredible care and kindness.
“We felt protected within a bubble while going through every parent’s worst nightmare, and it allowed us to get our heads together and navigate our grief before being released back into the outside world again.
“It was invaluable, because at that moment we weren’t ready to look after ourselves.
“We needed someone to hold us for a moment before going home and returning to a normal setting.”
Will and Jesse, who now have another son, three-year-old Beau, had been given a tour of The Nook before Otis arrived.
The couple were moved by the calm, peaceful atmosphere there – a far cry from the fast-paced, clinical hospital environment they had become accustomed to.
“It felt homely, welcoming, caring and loving – somewhere more personal than a hospital,” said Will.
“Otis stayed in one of the hospice’s cold rooms, and we were able to go and see him as much as possible.
“I found that so beneficial, as it meant it wasn’t an immediate, rushed goodbye – something I’ll forever be thankful for.”
Will says he and his family also received wellbeing support in the form of counselling and bereavement groups, including sessions for siblings.
“I feel fortunate we’ve had that support,” said Will, who works in marketing for a company called Landal, offering luxury lodges, cottages and apartments across the UK.
“On a personal note, it gave me an opportunity to talk through my feelings, and I’ll always be thankful for that.
“We’re just so grateful for everything, which is why it was such a pleasure to raise funds by doing the marathon.
“I’m so grateful to my friends and family for their support and fortunate to be able to give something back.”
Will’s fundraising page is still open. To sponsor him, click here.
