A ‘remarkable’ 13-year-old boy with a life expectancy of just 26 cheers on his footballing twin brother even though it hurts.
At three-and-half years old, Brae Sewell, 13, from Croydon was diagnosed with Ataxia-telangiectasia (A-T), a rare disorder that causes the body and the immune system to shut down slowly.
Against the odds and the predictions of his consultant, Brae has enjoyed most of his life wheelchair-free but since the first coronavirus lockdown in March 2020 his condition has deteriorated and he can no longer move around as independently as he used to.
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Sophie Wall, a close family friend, is raising money on behalf of Brae and his parents, Siobhan and Brian Sewell, to help pay for new equipment and home improvements to make Brae’s life more comfortable.
She told My London: “The consultant said he would be in a wheelchair by the age of seven and that his life expectancy was 26 years old.
Brae Sewell ‘just wants to be a normal independent teenager’
(Image: Siobhan Sewell)
“However, he’s 13 now and has only just started to rely on the wheelchair to get around.
“When he sits on the sofa, we have to prop his head up with pillows because he can’t hold his head up, he’s also starting to lose his speech.”
Sophie, 44, has known Brae his whole life and visits him and his twin brother Brogan at least once a week.
She said: “ We take Brae to see his twin brother Brogan play football, he’s in the Chelsea academy.
“It’s such a shame because Brae loves his football, it’s heart breaking to see his little face as the match goes on.
“It must be frustrating for Brae – the family are football mad and he’s not able to play.
“You can see he’s happy to see his brother score a goal but I’m sure, inside, he gets a bit upset.”
The twins are very close and always have each other’s backs.
Sophie said: “Brogan would do anything for his brother – if anyone ever says something horrible about Brae, because unfortunately, people do sometimes make remarks, he’s always the first one to stick up for him.”
There are currently around 170 cases of A-T in the UK and Ireland, around 1 in 400,000 population.
Brae with family friend Sophie Wall, who will be skydiving to raise money for vital equipment and home renovations
(Image: Siobhan Sewell)
The disease increases physical disability, while deficiencies in the immune system can lead to frequent colds and infections and the gradual emergence of lung problems.
These symptoms meant it was crucial for Brae’s family to stay in isolation during lockdown.
Sophie said: “Luckily, Brae is a big fan of computer games such as FIFA and Minecraft so he had plenty to keep himself busy.”
With his condition worsening, Brae’s friends and family are looking ahead to the future.
Sophie said: “There is no treatment for him, it’s just a case of managing the disease as best as we can.
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“Siobhan and Brian [Brae’s parents] have done a lot of fundraising for the disease but nothing to help Brae specifically, that’s why I decided to start this campaign.
“He can’t get up and down the stairs anymore, and his bedroom is upstairs, so they need to build an extension at the back of the house on the ground floor, with an en suite.
“He has to be carried up the stairs, and he’ll need help walking to the toilet sometimes, but he’s 13, he just wants to be a normal independent teenager.
“That’s the hardest bit, he wasn’t born this way, he used to run around, and that makes it so much harder for him to come to terms with.
Brae (right) with twin Brogan and parents Brian and Siobhan Sewell
(Image: Siobhan Sewell)
“You could see there was something wrong with him, but he was still playing and running at the age of 10.”
Until now, Siobhan and Brian, 43 and 54, have been managing on their own, while occasionally campaigning for the AT Society, but Sophie feels now is the time to do something for Brae specifically.
Sophie said: ” I think people will want to help, until now, Siobhan and Brian have been doing it all on their own.
“I can’t chat to Brae as I used to because his speech is worsening, Brogan’s the cheeky one cracking jokes, and Brae always has a smile on his face, laughing along, which is remarkable considering his circumstances.
“I just want to help all I can.”
You can donate to Sophie’s GoFundMe for Brae here as she attempts her first ever skydive.
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