James’ condition means he is confined to a wheelchair and as a result getting in and out of the family home is a struggle for both James and his family. Our aim is to provide a ramped access to the front of the property and to create a porch extension to ensure that James' can access the house with ease.
Band of Builders’ latest project is to help James, age 11 the son of Iain Dodd a Plasterer from Hemel Hempstead who suffers from a rare disease called Mitochondrial Disease.
After a normal pregnancy, James was born on 12 November 2008 weighing a healthy 8lb 4oz and up until the end of 2011, James was able to walk, climb, balance, play football in the garden with his dad, dance to music videos… all the things that another 3 year old boy could do.
On 1st December, James was suffering from tonsillitis, had a very high temperature and was so unwell that the family were advised by their GP to take him to A&E. In hospital James had what the family believe to be a seizure and was kept in until his heart rate and temperature settled, after a few hours James was back to normal and was allowed to go home.
A month or 2 passed when the staff at James preschool began to notice that he was holding his right arm at a kind of right angle across his body, it was also around this time that James' parents noticed that he was beginning to fall over a lot but put that down to him being a bit clumsy. Soon James' right leg began to cross over his left leg at the knee so the family returned to the GP to have him checked. Initial thoughts were that James had a type of Cerebral Palsy until a CT scan in the March of 2012 showed a large area of grey on the left side of his brain. The following month James had an MRI scan which showed that there was also grey on the right side of his brain so he was referred to Great Ormond Street’s Neurological Department.
After skin and muscle biopsies and a lumbar puncture, James' family were called back to GOSH on 19 October 2012 when the family were told that James had a Mitochondrial Disease. On 4th June 2013, James’ condition was finally confirmed with a diagnosis of Complex IV Deficiency also known as Leigh’s.
James is a happy, cheeky and funny 11 year old that still attends mainstream school and is a very popular with his friends and teachers alike. He is now reliant on a wheelchair and a walking frame as he no longer has the use of his legs. James can no longer hold a pencil and has a special tablet at school to help him record his work. When James is tired, his speech can become slurry and he finds it more difficult to eat and swallow. And, when his body gets “stressed” with all that it has to deal with physically on a daily basis, cyclic vomiting sets in from time to time which always results in James being admitted to hospital and attached to a drip for rehydration.
James family have been told that this is a life limiting condition for which there is no treatment and no cure.
Band of Builders aims to help James and his family by creating a small extension to the front of the property with a ramped access which will allow James access the family home with ease.
When: 18th January 2020 for 8 days. Unfortunately when our team of volunteers began digging ready for the footings they came across a large pipe which takes surface water for the entire street! After liaising with building control and Anglian water we’ve got a solution and the project is back on track to start 15th February!
What is Mitochondrial disease?
Mitochondrial disease, or 'mito', is the term given to a group of medical disorders caused by mutations in mitochondria, the tiny organelles that are present in every cell in our bodies and which generate about 90% of the energy we need to live. Cells cannot function properly without healthy mitochondria, so when they fail the consequences can be serious and wide-ranging.
Mitochondrial diseases affect people in multiple ways, depending on which cells are affected. This can make the condition hard to diagnose, as symptoms often resemble those of other serious illnesses. For example, a person with mitochondrial disease may suffer from seizures, fatigue, vision and hearing loss, cognitive disabilities, respiratory problems or poor growth. Any of the body's organs and systems can be affected including the brain, heart, lungs, gut, liver and skin.
For more information please visit the Lily Foundation website here.