Chasing Connors Cure resources
Meet Connor; our gorgeous, boisterous, fun loving, fancy dress wearing and rather loud 4-year-old boy.
And us; the Crawford’s, an average run of the mill household.
Until that day.
It was February 4th 2016; just 4 days after Connor’s 4th birthday. The day we would receive the devastating diagnosis.
We headed to our local hospital for what we expected to be a routine appointment for our slightly awkward 4-year-old boy. One who had reached every milestone with little concern, but who we just felt wasn’t as agile or quite so physically able as his peers. We expected to be referred for some physiotherapy or some such insignificant intervention – something small, something fixable.
The reality wasn’t so. Instead, we would find out our darling boy, had the awful, degenerative and life-limiting genetic disease Duchenne Muscular Dystrophy.
For those of you who don’t know about this cruel disease, it is a genetic disorder where the body is unable to produce a protein called dystrophin. As such, his little body will gradually degenerate. His muscles will weaken and usually these boys (as it mainly occurs in boys) will end up in a wheelchair between 8-12 years old with life expectancy shortened. Our hearts already break at the very thought.
We still struggle to come to terms with the diagnosis and the fact this disease has no cure but we are strong, resilient and have plenty of hope.
The positive news is we have a great support network in the local and Duchenne community.
More importantly research is underway for both enhanced therapy and a cure. It’s vital for Connor and boys like him, these projects receive funding to continue and accelerate their development.
Our Tonbrige Half Marathon
On the 2nd October a group of determined runners will be taking on the Tonbridge Half Marathon to raise money for Duchenne UK. What started as a few friends running has grown to over 50 participants taking part and counting!
This event stands to be a real community affair and with all of this support we hope to raise a significant amount for Duchenne UK to invest into research.
The event takes please in Tonbridge, Kent just 40 minutes train ride from Central London and promises to be a great day supporting the Duchenne community.
Equally, if you wish to donate you can do so on this page.
Published on 21 June 2016Share this articleCategories Uncategorised