Baby Lyall Cookward spent six months in intensive care and is permanently on a ventilator so he can breathe.
The 21-month-old was born with a heart defect and then diagnosed with a rare condition affecting his airway.
Now his family are campaigning to keep children’s heart surgery in Leeds for the sake of the region’s poorliest children.
Mum Steph Ward said: “Lyall’s had nine operations throughout his life and none of those would have been able to happen in Leeds if the expertise wasn’t here.
“You cannot risk a child with a cardiac condition having complications as a result of other surgery. A significant number of children with heart conditions also have other needs.”
Steph was pregnant with Lyall, who has Down’s Syndrome, when his heart condition was picked up.
Three weeks after he was born, he went into heart failure. Steph and her partner Sharron Cook were told he might not survive, but without the operation their son would die within days.
Thankfully he made it through the surgery though experts couldn’t fully correct the defect. Afterwards the tot improved but continued to be in and out of hospital for months.
In January last year Lyall had 11 hours of corrective open heart surgery at LGI. However he later developed breathing problems and tests showed he had a rare condition called broncheomalacia.
He had to stay for months in the children’s intensive care unit, where he was later also diagnosed with chronic lung disease.
After trying various ventilators, the tot improved and was allowed to spend time at home in Chapel Allerton, Leeds, from July.
Lyall, who has two brothers – Dan, 15, and Max, 11, is now a happy, sociable youngster cared for at home by his mums and nurses.
Steph said: “He will need to be on a ventilator for at least the next two to three years, possibly longer, possibly life.
“He has to have somebody with him 24 hours a day. We are living on a knife-edge. We know that if his tracheostomy comes out and we cannot get it back in, he is 10 minutes away from being dead.”
Steph and Sharron, both 43, had to resuscitate Lyall when that happened last year.
The couple said keeping children’s heart surgery in Leeds – currently under threat because of a national review – was vital as having all the doctors together was crucial for Lyall’s care and for him to be close to his family.
“If the service had not been in Leeds, it would not have been until he got onto a mobile ventilator in June that he would have been well enough to be moved back,” Steph said.
As reported in the YEP, doctors have warned that moving the service out of the city could cost lives.
For more details about Lyall, search for Raise A Smile for Lyall on Facebook, or to support the campaign, log on to www.chsf.org.uk or call Debbie Exley on 0113 3925907.