Colourful memorials installed around the Vale for Ysgol y Deri pupil with rare genetic disorder

By Ellyn Wright

24th Jun 2021 | Local News

Trees at locations in the Vale have been decorated in memory of Cai Turner, a young boy born with a rare genetic condition who recently passed away.

Cai attended Ysgol y Deri in Penarth, the only special education needs school in the Vale.

Today would have been Cai's 12th Birthday, and his family have created bright and colourful tributes in Cowbridge park and in their home village St Mary's Church.

His mum Micaela described how Cai spent most of the first year of his life in hospital, fighting infections before being diagnosed with Vici Syndrome aged four and a half.

"We felt like we'd get over one big problem and then there would be another one. The doctors realised he didn't have an immune system, so he was treated with immunoglobulins to build one for him," she explained.

"He also had sleep apnea and had to have a BiPap machine which prolonged his life.

"He probably went on to spend half of his life in hospital. But he was the oldest living child in the world with the variation of Vici Syndrome that he had, and only two other children in the UK have it.

A rare genetic disorder, Vici Syndrome affects a person's mobility, vision, and immune system.

Micaela said that as his health issues continued, she was told he would not live past two-years-old.

"He achieved so much in his life," she said.

"We called him 'King Cai' because he used to go to the Jungle Ward and he had long hair. So we started calling him Tarzan, King of the Jungle."

Sadly, things took a turn for the worst at the start of the year.

"The last 18 months of his life Cai had 45 admissions to hospital," said Micaela.

"Everything came to a head in February, it was really unexpected.

"He had sepsis a couple of weeks before and recovered, but then got it again. He got better but when they tried to extubate him it just didn't work.

"We made the decision to go to T Hafan and have whatever time we had left with him."

Cai passed away aged 11 on 3 February, but his family are making sure his legacy is not forgotten.

"Wherever he went, Cai made a massive impact," said Micaela.

"He was such a character and had a huge personality.

"Not only that, but we managed to change the way care was delivered for children like him.

"Initially Cai was on a milk feed, as he was so poorly. But I wanted him to have food, and we had lots of professionals say we couldn't do it.

"But I felt that if there was no medical reason holding him back, then Cai should have a more varied diet. So, we started doing blended food, which Cai had through a tube.

"Now, about seven years on, they're doing blended food for kids like Cai in school, hospital and T Hafan."

When Micaela recently visited Cai's school, Ysgol y Deri, staff showed how they had switched from milk to blended food for the majority of the pupils who needed it.

"I believe that every child should be treated the same, disability or not.

It's about what they can do, not what they can't," said Micaela.

The family are now also fundraising for specialist toys to donate to Noah's Ark Children's hospital, based on their experiences on the wards.

"I always used to find myself going into the playroom, and there was nothing suitable for Cai to play with," explained Micaela.

"A lot of the toys are for younger children, but there's other kids there who maybe have the most limited of movement, but they can still access a toy if they're given the right tools.

"Cai didn't move a lot, but he was able to press a button and play that way.

"We're going to give them a box of toys that could help educate and entertain children with special difficulties.

"Sometimes you can be in hospital for weeks or months, and these specialist toys are often expensive for parents."

In the meantime, the memorials in Cowbridge and St Mary Church are there for everyone to enjoy.

"They're something bright and colourful that people are going to notice the same way that they noticed Cai," said Micaela.

"I just felt that I wanted something that represented him in like a really positive way that other people could see.

"We would visit the park in Cowbridge, and it was somewhere Cai could be happy.

"He went through some of the most difficult things in life and yet still managed to smile.

"That's how I want him to be remembered, and for people to see what a massive difference our little boy's life had."

Learn more about the toy fundraiser here

     

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