Hugo was diagnosed with BMD in June 2016 at the age of three. The fact our happy, charming little boy had been diagnosed with a degenerative muscle wasting condition was devastating, especially when we realised that there is currently no cure or treatment for the condition.
Hugo currently uses a wheelchair when necessary, however because the severity of BMD is so varied, we are unsure as to the speed at which the condition will progress. This has brought a great sense of uncertainty for our family's future and means that we have to hope for the best, yet plan for the worst.
As BMD is so rare, we feel it is important to raise awareness of the condition in the Jersey community. We also hope to raise as much money as possible to find a cure and reach a greater understanding of the variations in severity of the condition .