Kind-hearted tradespeople step in to help Hemel boy suffering from rare disease

James Dodd suffers from rare mitochondrial disease, which has left him confined to a wheelchair, unable to hold a pencil at school and struggling to speak, he also finds it difficult to eat and swallow.

While James still attends mainstream school, he struggles to walk and which makes it difficult to get in and of his home because the entrance is too uneven for his wheelchair or walking frame.

After hearing about the family’s situation Band of Builders, a national charity that helps tradespeople and their families, are stepping in to create a ramp at the front of their home as well as a porch extension to allow James to get in and out more easily.

The volunteers are heading to Hemel on Saturday, February 15, for eight days to carry out the work, they will give up their time for free and will be using materials donated by various companies.

James’ dad Iain, a plasterer, said: “A ramp might not sound like much, but this will make a huge difference to us.

"James can’t walk and struggles with balance, so getting him in and out of the house at the moment is incredibly difficult and having to contend with extra challenges like that day-in, day-out, really does take it out of all of us.”

James was born a healthy baby in November 2008 and up until the end of 2011 was able to do everything any other child could do. But in December that year he was rushed to hospital with tonsillitis and suffered what his family believe was a seizure. After recovering, staff at his pre-school noticed James was holding his arm strangely, while his parents also noticed he was falling over a lot.

Doctors initially thought James was suffering from Cerebral Palsy but after months of tests, he was diagnosed in October 2012 with mitochondrial disease. The following year, his condition was finally confirmed with a diagnosis of Complex IV Deficiency also known as Leigh’s.

James’ family have been told that this is a life limiting condition for which there is no treatment and no cure. Mitochondrial diseases affect people in multiple ways, depending on which cells are affected, which can make the condition hard to diagnose.

Despite his condition, James still goes to mainstream school, where he is popular with his friends and teachers. He is reliant on his wheelchair and a walking frame and has a special tablet at school to help him record his work.

Band of Builders is a national charity that helps members of the UK construction trade and their families through practical projects.

Andrew Pell, project lead on James’ Project, said: “We’re thrilled to be able to help James and his family. We were initially due to start this project in January but came up against a bit of a stumbling block - namely a large drainage pipe exactly where we were digging the footings.

“Thankfully that’s all resolved and we’ll be getting underway. We’ve got people coming from far and wide to help and we just can’t wait to get on site.”

The project will be revealed to James and his family on Sunday, April 5.