Little Hector Tully, aged one, was born extremely premature at 23 weeks on 12 November 2021, weighing just 655 grams (or around 1.4 pounds).
He had multiple health complications including hydrocephalus, which is build up of fluid on the brain, due to a bleed on his brain, chronic lung disease, retinopathy, a feeding tube and centralised sleep apnoea.
His parents Marie Clare and Angus Tully, both aged 41, from Edinburgh, were told to prepare to say goodbye to their son as he had a slim chance of survival due to his medical conditions - but Hector defied the odds and turned the lights on at the hospital that cared for him - just days after his first birthday.
The greatest gift
Mum Marie Clare said having her little boy home for Christmas this year was the ‘greatest gift’, especially as he spent it in hospital last year. She had the joy of watching Hector turn on the Christmas lights at the Royal Hospital for Children and Young People (RHCYP), Edinburgh, on Sunday 27 November. He spent 259 nights of his life there, and also underwent 15 operations there.
She added that the family will always be grateful for the care Hector received from the Simpsons Neonatal Unit and Edinburgh Children’s Hospital Charity (ECHC). Hector pressed a big red button to light up the 20ft tree and surrounding area of the hospital which has cared for him since birth.
Marie Clare said: “When Hector was born, we were told he would only be with us for a day or two and that we should prepare to say our goodbyes. For the first two months of his life, we were just focusing on getting to breakfast, then lunch, then dinner – praying he would survive.
“We were able to take him home in April, but he has had multiple admissions, including a lengthy stay in hospital from June to September. Although we were able to take him home in September, we’ve had at least 25 A&E visits since then. There have been lots of ups and downs and he has spent more time in hospital than he has at home.”
Marie Clare, chief executive of charity Columba 1400, and dad Angus, director of music at Fettes College, said it was still ‘touch and go’ with Hector last Christmas.This year, however, the family will have their first Christmas together at home, which Marie Clare said was impossible to imagine this time last year.
Big thank you to the hospital
Marie Clare thanked all the hospital staff who have helped Hector in his short life.
She said: “The care and love we have been shown by everyone at the RHCYP has been outstanding. The doctors, nurses, domestics, allied health professionals, charity – everyone has been such a huge part of his journey. It’s thanks to everyone there that Hector is here with us this Christmas.
“We are deeply honoured to have Hector switch on the Christmas lights for ECHC. Hector loved when the people from the charity would visit to dance and sing with him. One of the first times we saw him laughing was during a charity show, which was really special.
“It’s hard to imagine that this time one year ago we were standing by his cot in the neonatal unit, not knowing if he would survive the night. We decided at the beginning that even if we only had one day, 11 days or 111 days with him, we would make sure they were the very best days. It hasn’t been easy, but it has been the best year of our lives because Hector’s here. We feel so blessed to have him.”
The family is supporting ECHC’s new Christmas appeal, which asks supporters to help bring magic to seriously ill children and families in hospital this December.
Pippa Johnston, Director at ECHC, said: “We would like to say an enormous thank you to Hector and his wonderful family for helping to make the hospital’s Christmas light switch on so memorable. They are a remarkable family and Hector is a hero in every sense of the word.
“Every year, in partnership with our friends at NHS Lothian, ECHC works hard to make time spent in hospital a little bit brighter through our daily fun activities, family support service and hardship fund. At Christmas, this becomes even more vital, but we rely solely on donations to do this. Though we can’t stop their pain, we can deliver happiness. We are asking the people of Edinburgh to make Christmas extra special for children in hospital this year.”
To donate to ECHC’s Redirected Letters to Santa Christmas appeal, visit the Edinburgh Children’s Hospital Charity official website.