To say thank you to the staff at Great Ormond Street, his uncle Tom Waines has raised more than £11,000 by running the London Marathon.
Baby Henry has spent almost all of his short life in hospital, after he was born in November with a rare condition which affects his breathiing, initially moving from Hull Royal Infirmary to Leeds and then to Great Ormond Street.
But after an eight-hour operation in November to rectify the problem with his airway, his family are hoping that he might be able to return home to Bridlington in the near future.
Tom, a builder from Flamborough, said: “It’s a long road, and we are a few months into it but we are hoping he might be home in the next couple of months.
“He has only ever had four nights at home, but the operations he needed have been done and it’s just a case of getting him stronger.”
Henry recently had a stent fitted in his windpipe which had to be specially-made in the Czech Republic, and that was after the initial eight-hour open heart surgery. He is still in intensive care and his parents Ben and Shevonne have been living at hospital accommodation in London to be by his side.
But Tom said his nephew is ‘making small steps towards going home each day and giving smiles when he can’.
“Henry was born with a rare abnormality of his airway called Long Segmented Tracheal Stenosis,” said Tom. “This meant his airway was only 1.5mm wide when it should have been 6-8mm.
“This resulted in Henry struggling to breathe. To put that into perspective, it’s like an adult sprinting 100 metres and then breathing through a straw to catch their breath.
“There are only two places in the world that can correct this abnormality and Great Ormond Street is one of them. 80% of the world’s cases of Long Segmented Tracheal Stenosis have their corrective operations there every year, approximately 12 to 14 babies.
“Henry not only had this life threatening condition but he also underwent surgery to close two holes in his heart and have his left pulmonary artery resited as he was born with it wrapped around his already narrowed wind-pipe, which was strangling his airway further.”
Tom, who is married to Jess and has two children of his own, Hattie, 3, and Joey, 18 months, said he was convinced the skill and dedication of the Great Ormond Street staff had saved Henry’s life.
“Without GOSH’s specialist tracheal team, Henry wouldn’t be with us now,” he added. "Having given him a very complicated, lengthy surgery he now has the very best chance at a normal life.
“Ben and Shevonne have been provided with excellent support, care and service. Their accommodation provided to them whilst in London has been extremely useful – only 30 seconds from the hospital front door.”
To say thank you, 35-year-old Tom decided to train for the London Marathon, and completed the 26-mile course in five hours and 12 minutes.
He said: “It was my first full marathon, although I have done Bridlington Half Marathon and the Great North Run.
“It was hard work. I had a problem with my knee which affected my training and it played up at around mile 10 or 11, through the latter half of the race I was forced to fast walk, plus it was very warm.
“I kept thinking of Henry to get me round, as well as my own children who haven’t been able to spend much time with their cousin yet. They inspired me.”
Tom’s efforts have seen him raise more than £11,000 for the hospital. “We are astonished by how much we’ve raised,” he said.
“We started with a target of £1,000, but got to £2,000, so we put it up to £3,000, £4,000 and kept moving the goalposts to £10,000, but we’ve even passed that.”
To make a donation, visit www.justgiving.com/fundraising/givingbackforhenry