Laura and Liam Keenan’s baby son Harry and older brother Max were born with a rare genetic condition which affects around one in 3,000 to 4,000 people in the UK.
The inherited Alpha-1 antitrypsin deficiency means they lack the protein that protects the liver and lungs from pollutants.
Primary school teacher Mrs Keenan, of Pudsey, said the prospect of her two sons suffering a lifetime of uncertainty living with the condition is “terrifying.”
Mrs Keenan, who works at East Ardsley Primary Schoolin Wakefield, is supporting the YEP-backed Be A Hero campaign calling for people to sign the Organ Donor Register and talk to their families about their decision during Organ Donation Week, which ends on Sunday.
Harry was an apparently healthy baby when he was born in June 2016. But when he was aged around nine-months-old his stomach became swollen and the veins in his chest started to protrude.
Doctors at Leeds General Infirmary initially suspected he was suffering from cancer, but later discovered he had life-threatening end stage liver disease.
Mrs Keenan said: “The doctor said at some point he would need a transplant, but after he was in hospital for a few weeks they did more tests and realised he was declining quite rapidly so he was put on the transplant list at ten-months-old.” Harry underwent the eight-hour operation late last month.
Mrs Keenan said: “The operation was successful and he is doing really well. He is walking about and playing in the isolation room in hospital.
She added: “We were happy he was getting the transplant, but Harry getting better coincided with someone losing a loved one and it was a tragic day for that family.
“We feel very grateful for the decision they made because they saved our son’s life and probably other people’s lives as well.”
Mrs Keenan said Max is suffering from one of the same symptoms as Harry.
Max’s veins in his chest are protruding as a result of a condition called portal hypertension, where his veins are being overworked because the liver is not functioning properly.
Mrs Keenan said: “It’s definitely a possibility that Max will need a transplant. It’s very unusual for a child of Harry’s age to need a transplant due to this condition.
“It normally happens when children are older or even when they become adults.
“It is terrifying because it will affect them for the rest of their lives. With a liver transplant they will be immune suppressed and have to take drugs for ever.
Mrs Keenan said: “He can live a normal life. He will just have to be extra careful about his health. He could reject the liver at any time.”
Leeds Teaching Hospitals NHS Trust is urging people to sign the Organ Donation Register as part of its Be A Hero campaign, which is backed by the Yorkshire Evening Post.
Around 100,000 Yorkshire residents have been inspired to signed the Organ Donor Register since the Be A Hero campaign was launched in July 2015.
This year, the campaign is seeking to increase the number of registered organ donors in Yorkshire by 50,000 in just six months. NHS Blood and Transplant are also urging potential donors to speak to family members about their wishes after revealing many families are often unsure and decide it is safer to say no.
It means around 460 lifesaving organ transplants are missed each year.