Two girls who only have half a brain are walking 200 miles for charity

Two girls who had to have half their brains removed due to a rare condition are walking nearly 200 miles for charity. 

Caity Downs, 19, and Angelina Mills, 11, both have Sturge Weber syndrome, an extremely rare neurological condition that can trigger life-threatening epileptic seizures.

The seizures were so dangerous – with Caity suffering around 100 episodes a day – that they both had hemispherectomy surgery when they were toddlers, leaving them each with half a brain.

The friends are now walking the distance between their homes in Norfolk and Brighton over 10 weeks to raise money for the charity Sturge Weber UK.

“It’s remarkable that both of them are actually able to do these miles and this challenge because of all the struggles that they still do have,” Angelina’s mother Lisa Massingham told Sky News.

Both the girls have weakness in one side of their body due to the surgery – the side opposite the removed part of their brain – and have just one functioning arm and leg each.

It means that walking long distances can be a challenge.

They also suffer from partial sightedness and have social and behavioural difficulties.

But for both girls, the alternative of not having the surgery at such a young age was far worse.

They were having daily seizures that could not be controlled by medication, and surgeons feared they could eventually prove fatal.

“[Angelina] wasn’t gaining development, she was losing it,” Ms Massingham said.

“She would gain the ability to hold her head up and then she would have a cluster of seizures and that ability would be taken away. It’s clear that the seizures were causing a certain amount of brain damage.”

Both the girls were told they would be candidates for surgery because the seizures were only affecting one side of their brain.

The surgery was risky, and it could have left them unable to walk or talk.

“When a surgeon tells you that they need to take half your child’s brain away, it’s difficult to comprehend,” Ms Massingham said.

“I just put my faith in the surgeons. Thankfully, it paid off.”

The girls, who were operated on by the same surgeon, no longer suffer from regular seizures and are able to walk, talk and learn.

They became friends through meet-ups held by Sturge Weber UK and now regularly keep in contact through video calls.

They decided to take on the 198-mile walk as a way of raising awareness of their condition after the coronavirus pandemic scuppered their plans to meet.

Caity, who regularly raises money through bake sales, said: “For me, I’ve done quite a lot of fundraising before. The main thing is to raise awareness and encourage people to learn more.”

The girls are only able to manage a few miles a day, and Caity’s mother Paula Harman said some of the longer walks “wear her out and leave her in so much pain”.

Angelina recently had surgery on her foot as her condition was causing it to turn inwards and roll over, and sometimes she needs to use a wheelchair.

But the pair are determined to complete their challenge and have so far completed nearly 20 miles between them.

Asked how much the charity has helped her, Caity said: “Genuinely I couldn’t thank them enough for everything.”

(c) Sky News 2020: Two girls who only have half a brain are walking 200 miles for charity