A boy born with a rare liver disease has undergone a third transplant and is “getting his life back” after being very poorly.

Harry, now 13, from Shrewsbury, stole the show when he appeared on BBC Breakfast in December 2015 and caught sight of himself on the monitor.

His mother, Clare, said she wanted more families to talk about organ donation and said a simple conversation about final wishes could save a lot of difficult decisions and increase the number of organs donated.

Since a change in the law in 2020 all adults in England have been presumed to be a possible organ donor when they die, unless they have opted out, but families can override that.

Harry received his first liver transplant just before his first birthday and then needed a second in 2016, when he was four years old.

On that occasion, his father Simon stepped in and successfully offered part of his organ to his son.

But his mother said 18 months ago Harry started to become unwell again, suffering from blood-flow issues.

This time doctors said a live donor was not suitable and he had to wait for a suitable organ.

The family got the call in the early hours of the morning, just before Christmas, and he underwent a 15 hour operation at Birmingham Children’s Hospital.

Clare said 12 weeks after the latest operation it was “lovely to see him being back to himself, because he hasn’t been himself for a long time”.

She said Harry, who is in Year 9, had been “absolutely desperate” to get back to school and had missed being around other children.

The most recent transplant appeared to have taken well and Clare said “everyone is cautiously optimistic” that this one will grow with him into adulthood and he will not need to have another.

She said: “Whoever Harry’s donor is, we can never thank them enough, because he is a different child and it has very much given his life back and given him his future.”

But Clare said there was still a need for more organ donations, to help families like hers.

She works as a funeral celebrant and said when she spoke to the families of organ donors they were “so proud of what their loved one had done”.

The change in the law in 2020 still allowed people to opt out of donation and provided exemptions for people in groups who are not allowed be donors.

It also gave the final say to the families of the potential donor, allowing them to tell doctors a donation will not take place.

Clare said that perhaps because there was confusion about a loved-one’s final wishes, this had restricted the number of available organs

For that reason, she said it was important to talk.

Andy Giddings
BBC News, West Midlands

BBC Shropshire