A four-year-old Bridlington boy who needs a 24-hour breathing device, faces a 300-mile round trip to hospital for treatment.
Henry Waines was just five-weeks- old when he was diagnosed with a rare heart disease.
What is theDoctors discovered that Henry’s windpipe was at least four times smaller than it should have been and he also had two holes in his heart.
His parents say they are “unsure what the future holds” for their son.
Henry was transferred to hospital in December 2017 when he was just five weeks old, after being diagnosed with a rare congenital heart condition, where his left artery was wrapped around his windpipe.
He underwent surgery at Great Ormond Street Hospital (GOSH), London, to make it easier for him to breathe.
His first Christmas was spent in the hospital’s Cardiac Intensive Care Unit (CICU) recovering from his surgery,and a year later in 2018.
Henry spent Christmas on a ventilation ward at the hospital, with his parents by his bedside.
Henry was able to go home in January 2019 but is still cared for by GOSH, and has a tracheostomy and ventilation tube.
He spent 15 months in hospital, meaning his dad Ben had to travel 300 miles from work in Bridlington every weekend.
His mum Shevonne, explained:“We never knew whether he would be able to speak, due to him having a paralysed vocal cord post surgery at five weeks of age. Henry used Makaton heavily to communicate when he had no voice however now he uses Makaton to support his speech. His voice is getting stronger and he is making himself understood really well.”
Makaton is a language programme that uses signs together with speech and symbols, to enable people to communicate.
“Henry’s right lung does most of the work for him, as his left one is pretty poor. It has poor air entry.
“We don’t really know what the future holds for Henry and whether he can manage without the ventilator or tracheostomy but we are hopeful that the expertise at GOSH can help this to happen and if not, then we will continue as we are, enjoying life with our special little boy.”
“He is just a real character and often makes us all laugh. He is a very loving child and is confident in other adults company even after all he has been through,” she said.
Henry was the star of Great Ormond Street Hospital’s 2021 Christmas campaign, starring in adverts that spearheaded the annual national fundraiser.
A local appeal, organised by Richard Binsley from Smith’s Butchers in Bridlington raised well over £1,000 for GOSH.
To donate: www.gosh.org
