The mother of a toddler waiting for a heart transplant since Christmas Eve has said she and her family are living “from one day to the next”.
Shannon Heagren was told her son Grayson, now 17 months, would need a new heart before his second birthday.
The 25-year-old from Peterborough urged other parents to discuss the organ donor register with their children.
“If you can give someone else a chance at life, why wouldn’t you register?” she said.
Ms Heagren was speaking on Sunday on World Heart Day, as NHS Blood and Transplant, the part of the health service which oversees the donor list, urges people to consider organ donation.
A law change next year to presume consent for organ donation will not extend to children, but authorities hope it will prompt discussion in families.
Grayson has dilated cardiomyopathy, meaning part of his heart is enlarged. It works at just 14% capacity and he needs to be fed through a tube.
As one of 42 children in the UK waiting for a heart, the call announcing a match has been found for him could come at any time.
“Every time the phone rings I wonder if that’s the call,” Ms Heagren said.
Young patients wait on average two and a half times as long as adults, as heart sizes must be matched to avoid straining other organs.
Angie Scales, of NHS Blood and Transplant, said: “Losing a child is a devastating but we know parents who agree to donate their child’s organs gain great comfort and pride from knowing that their child has saved the lives of other people, often young patients.”