A four-year-old boy who is on a 24-hour breathing device faces a 300-mile round trip for hospital treatments.
Henry Waines, was just five weeks old when he was diagnosed with a rare heart disease, ExaminerLive reports.
The "kind and gentle" child, who has two siblings, was found to have a windpipe that was at least four times smaller than it should have been and two holes in his heart.
His parents say they are "unsure what the future holds" for their suffering son.
Henry was transferred to the 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 then 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.
The "happy" little boy, from Bridlington, Yorkshire, was able to go home in January 2019 but is still cared for by GOSH.
He also has a tracheostomy and ventilation tube.
Henry spent 15 months in hospital, meaning his dad Ben had to travel 300 miles from work back in Yorkshire every weekend.
Despite being much better, Henry still suffers every day.
Speaking about his condition his mum Shevonne said: "Henry still requires 24 hour ventilation via his tracheostomy, however he has a voice now and can talk.
"My husband and I felt apprehensive as it confirmed his condition’s severity, but we are grateful he has a chance.
"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 understand really well."
Makaton is a language programme that uses signs together with speech and symbols, to enable people to communicate.
She added: "He requires fewer regular medications now and has made a little improvement with a reduction in his ventilation which is good.
"The ventilation actually damages the lungs however Henry can't manage without the ventilation so it’s a necessary evil.
"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.”
His mum added that the four-year-old loves playing outdoors, going to his granddad's house, and watching The Wiggles.
She said: "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."
