Kind-hearted tradespeople step in to help 11-year-old Hemel Hempstead boy suffering from rare disease

A group of kind-hearted tradesmen and women from across the country are descending on Hemel Hempstead to help an 11-year-old boy suffering from a 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, the fact he struggles to walk makes some things difficult – including getting in and out of his own 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, stepped 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

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 tonsilitis 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 disease, or ‘mito’, is the term given to a group of medical disorders caused by mutations in mitochondria. Cells cannot function properly without healthy mitochondria, so when they fail the consequences can be serious. 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. When he is tired, his speech can become slurry and he finds it more difficult to eat and swallow. Additionally, when his body gets stressed, he suffers from cyclic vomiting which often leads to him being hospitalised.

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 pipe supplying water for the whole street 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.”

Over the eight days of the project, 17 volunteers from Band of Builders will carry out the work to the Dodds’ home, giving up their time for free and using materials donated by various companies in the construction sector. They will reveal the project to James and his family on Sunday, April 5th.

ENDS

 

NOTES TO EDITORS

1. Media are invited to attend the project at James’ home in Hemel Hempstead. The project will now take place from Saturday, February 15th and finish on February 22nd. For more details or to arrange interviews, either on site or over the phone, please contact Ellen Manning from Band of Builders on 07515 717173 ellenmanning@bandofbuilders.org
2. Attached are images for media use of James with parents Iain and Angela. More images of previous work carried out by Band of Builders are available on request.

 

ABOUT BAND OF BUILDERS

Band of Builders was formed in 2016 after landscaper Addam Smith asked for help to renovate the garden of his friend and employee Keith Ellick, who had been diagnosed with terminal cancer. Keith lost his battle with cancer in 2017 but Band of Builders continued with the aim of helping other members of the UK construction industry battling illness or injury. Band of Builders was declared a registered charity (Charity Number 1182283) on March 1, 2019.

Previous projects have included:

• Installing a specialised bathroom for Pippa Atkinson, an electrician’s daughter suffering from a rare skin condition
• Landscaping a garden for builder Jamie Thompson, who is suffering from Motor Neurone Disease, so he can safely watch his children play, as well as installing a new kitchen.
• Finishing renovations at the home of Elaine Dunphy, whose husband Steve died of cancer before he could finish the work he had started.
• Creating a bedroom for plasterer’s daughter Sadie Jenkins, who had spent the first half of her life in hospital and needed machines to breathe, as well as installing a downstairs bathroom for her carers.
• Installing a summer-house and landscaping the garden for carpenter Dan McIntosh, who was diagnosed with a terminal brain tumour, so he could spend precious time with his family.

For more information on how to become a member or how to apply for help from Band of Builders, visit www.bandofbuilders.org