Siblings aiming high at British Transplant Games

"I was really sick before the transplant. It was scary. Now, I'm hoping to get silver in the high jump."

Wren, 13, said she was aiming high at this year's British Transplant Games, which she was taking part in for the fourth year running with her brother Milo, 12.

The children, from Rutland, who were both born with a rare genetic liver condition and had life-saving transplants, said they are grateful for their donation, which has allowed them to go from strength to strength.

It is thought they are the only siblings to be competing in the annual games, and the pair added it was "cool" to be experiencing the event together.

Wren and Milo both have progressive familial intrahepatic cholestasis type 2 (PFIC2) - a rare uncurable disorder preventing the liver releasing bile into the gut, which eventually causes the liver to fail.

The condition affects one in 50,000 to 100,000 children, and those affected will need a liver transplant at some point in their life.

Their mother Rachel, 44, said she started noticing symptoms when Wren "just wasn't growing", and at four months suffered from sepsis on several occasions.

"You need bile to break down the fat in your milk to help you grow," she said.

"She needed so many calories that I was just feeding her constantly.

"She was really tiny and she never slept for more than 30 minutes at a time.

"It was just horrendous."

Wren was diagnosed at the age of one when Rachel was pregnant with Milo, who showed symptoms when he was born and was diagnosed with PFIC2 at two weeks old.

Rachel said the disorder causes severe itching and for Milo it was "completely unsustainable".

"He's got eczema and once the itch kicked in when he was one, he had no skin left and he was always getting infections," she said.

"It was awful, it was just no life."

Milo underwent a liver transplant due to his eczema in 2016 when he was two, and Wren in 2021 aged seven, both at King's College Hospital in London.

Rachel said both their symptoms and sleep improved, adding Wren was "barely recognisable".

"Pre-transplant she had never ran or played any kind of physical game because she was just so low on nutrients and exhausted all the time," she said.

"Wren would say, 'I'm never going to be like one of those kids that's running about places'.

"All of a sudden she grew and started running everywhere. I had to call her back, which I never had to do.

"She's got a sister that's two years older and she was running past her."

With their new found energy, the siblings joined King's College's transplant team in 2023, taking part in various sports including ball throw, discus and the obstacle course.

The pair said they had been preparing and were "really excited" for this year's games.

Wren said: "It's really cool because we think that we're the only siblings there."

She said the event has helped her to "grow in confidence", and added: "Before the transplant, I was shy and quiet. I feel I've come out of my shell.

"There's so many amazing personalities, and everyone's so kind and understanding.

"I'm really grateful because my liver's keeping me going."

The teenager said she was aiming high, adding: "I'm quite short for my age, so being able to do high jump is quite fun and exciting.

"I got a bronze last year, so I'm hoping to get a silver this time."

Milo said he had made some good friends at previous games, and was "excited to meet more people".

"It's my first time doing the speed walk, but I'm feeling pretty confident," he said.

"It's a fun experience and nice that me and my sister can do it together."

Rachel said: "We've always got this awareness that Wren and Milo have been so lucky. Neither of them would have made it to 10 if they hadn't had the transplants.

"Everybody does the donor run. It tends to be quite an emotional event. There's people from the age of two up to their 90s.

"To see the lives that people have that they wouldn't have had, it makes us all really grateful.

"It's a special community, people who have all been through the same thing, and a really nice carnival atmosphere."

Over four years, the family has raised more than £3,500 for the hospital's charity and helped raise awareness of the importance of organ donation.

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