‘Brave’ 12-year-old to run for brother who suffers from rare genetic disease
PUBLISHED: 19:03 01 July 2020 | UPDATED: 09:37 03 July 2020
A big-hearted boy whose younger brother suffers from a rare genetic disorder is taking on a running challenge to raise money for Ipswich Hospital’s Children’s Appeal.
CJ Mann is hoping to raise hundreds for the hospital, where staff regularly help his seven-year-old brother Daley, who suffers from severe epileptic fits brought on by Koolen de Vries syndrome.
The condition, which affects just 13 other people in the UK, has delayed Daley’s growth and causes seizures which can last for a couple of hours at a time.
Following his brother’s most recent episode, CJ decided he wanted to raise money by running just over a mile from his grandparents’ house back to his Ipswich home every day for a week, starting from Friday July 10.
He will do so as Poppy, a character from the popular animation Trolls which is one of Daley’s favourite films.
His mother, Leanne Mann said: “We’re very well known at Ipswich Hospital now because we’re in there so much.
“CJ is at that age now where he is changing and things are just so unsettled. He’s not at school and he’s not seeing his friends.
“He is still so happy and willing to do something like this. To run down a main road dressed as a girl is amazing. He’s very supportive.
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“We are really proud of him and we think he is so brave.
“It does really affect him mentally when Daley has a seizure and for him to then say ‘I want to help’ makes us very proud.”
Daley is currently trying new medication to control his seizures, from which he has suffered for five years.
However, if it does not work, he may be left with few options.
Mrs Mann added: “Most children have their epilepsy under control but for some reason we can’t control Daley’s at the moment.
“We’re on our last medication. After this we have to try the Keto diet and then if that doesn’t work then we don’t really know what to do.
“He’s been on life support so many times because of the seizures and they last for a very, very long time.
“At the moment he is having them all the time. He’s now having them when he’s awake which he never used to do. It is a really worrying time.”
The Children’s Appeal hopes to raise the £2.5m needed to build a new-look children’s department at Ipswich Hospital.
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