Help nine-year-old James’ parents buy him an £8k medical vest
PUBLISHED: 08:00 30 November 2015 | UPDATED: 12:03 30 November 2015
A FAMILY is raising money for a medical vest for their nine-year-old son with cystic fibrosis to help give him more independence.
About cystic fibrosis
* Cystic fibrosis is an inherited disease, caused by a faulty gene. It causes the lungs to be clogged with mucus, making it difficult to breathe.
* There is no cure, but there are treatments to manage it, including physiotherapy, medication and exercise.
* One in 25 people carry the cystic fibrosis gene, and if both parents have it, there is a 25 per cent chance the child will have cystic fibrosis.
* James’ parents want to encourage more people to sign up to the organ donation register, as many of those with cystic fibrosis will require a new lung at some point in their life.
James Hart was diagnosed with the inherited disease when he was 18 months old.
It means the gene controlling the movement of salt and water in his body is faulty, so the lungs become clogged with mucus, making it hard to breathe.
His parents, Claire and Andrew from Banwell, want to raise £8,000 for a vest which uses small vibrations to clear the mucus.
Andrew said: “Instead of us patting him and making him cough up mucus, this vest, which he uses for 20 minutes a day, will vibrate him and help him cough up himself.
“We have got one on trial for three months, and then we want to buy one.
“He loves it. We don’t have to pat him anymore and he can just sit and be vibrated basically. It will give him some more independence.”
James, who attends Hugh Sexey Middle School in Blackford, is a keen quad-biker and climber.
He is currently in hospital receiving intravenous treatment to try to break up some of the mucus.
Andrew said: “He took his computer with him and so can do school work.
“And the school sent a teacher round and they do reading with him while he is there.”
A fundraising event was held at the Brewers Arms in Banwell at the weekend, staged by musician friend Darren Sims, which helped to raise £1,425.
Andrew said: “I have been watching him perform for eight to 10 years and I know he is into fundraising for charity.
“I contacted him on Facebook to see if he had any ideas and he got the ball rolling.
“I was very emotional at the event, and would like to say thank you to those who came along and helped.”
Darren also set up a Just Giving page, which has raised £2,500 in a week.
To donate, visit https://www.justgiving.com/helpjames
Alternatively, donate £5 by texting VEST66 £5 to 70070.
The next fundraising event will be on December 28 at Banwell Football Club in Riverside, where there will be a football match, live music and race night.
More information will be posted on the link above when it is confirmed.
If you value what this story gives you, please consider supporting the Weston Mercury. Click the link in the orange box above for details.