BiographyThomas was born two weeks early as a healthy newborn. When Thomas was a toddler we noticed he wasn't developing physical skills at the same rate as his peers. He struggled to climb, balance, jump, stand on one leg and hop. We were referred to a paediatric doctor and lots of tests were carried out. Part of these tests was a blood test and Thomas's came back with high CK levels which is an indication that he had Muscular Dystrophy. We were sat down and told the devastating news, Thomas had further tests which confirmed he had Duchenne Muscular Dystrophy.
DMD is a rare genetic condition which results in muscles wasting over time. This means Thomas's body does not produce a protein called dystrophin which is needed for the muscles to function correctly. A child like Thomas only has a life expectancy of around 20 years.
Thomas's quality of life will be severely affected and with time he will need to use a wheelchair full time due to the muscles in his body stopping working. Eventually this will affect all of Thomas's muscles including the heart. There are currently no cures or treatment options available for Thomas and others with the same condition.
Thomas has regular examinations and tests to monitor his condition, he always has a smile on his face and just gets on with anything that is requested from him. In the last 11 months he has had 3 hospital admissions due to him being poorly.
He has to be treated for adrenal insufficiency, this is caused by long term steroid use. It takes Thomas twice as long as a healthy child to get over illnesses.
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