I am running for Jack. 

The sweetest, funniest, brightest child in my pre school room. A child that has very often made me wheeze with laughter 

(like when I had closed my finger in a door and a said it had been pinched and he looked at me seriously and asked 'was it a crab?') 

or when he designates himself waiter for all of pre-school lunch time, takes their order, hands pre-schoolers the bill at their table. (he will offer to pay with 'card machine', what a gentleman) 

I am going to hand over to Jacks parents from here to tell their story..... 

Jacks story in his parents own words 

In February 2023 we had some upsetting news that after a long-awaited medical appointment for
Jack. We arrived at the paediatric appointment at John Radcliff Hospital expecting to discuss
neurodiversity, based on some delayed development. What we hadn't anticipated was the
possibility of a neuromuscular condition, so hearing the paediatricians concerns completely
sideswiped us, as did the multiple appointments and tests in the weeks that followed.
When we finally received the definitive confirmation from the genetic test results that Jack has
Duchenne, a rare Muscular Dystrophy condition (DMD) that mainly affects boys, there were just no
words.
We knew nothing about Duchenne Muscular Dystrophy it was simply so far from being on our radar
and we have since learned that many other parents and caregivers often say the same. We believe
this needs to change, parents need to know about this condition and be informed enough to know
what to look out for.
DMD is a genetic disease that causes muscle weakness and wasting. It is the most common and
severe form of muscular dystrophy. It is caused by a fault, known as a mutation, on the dystrophin
gene. Dystrophin is a protein that protects muscles; without it, muscles are easily damaged, and
their strength and function is weakened. It eventually affects all the muscles in the body, including
the heart and lungs. Boys will typically require full wheelchair use by their teens along with a
multitude of additional equipment as the condition progresses.
DMD almost always affects boys and is typically diagnosed in childhood between the age of three
and six.
There is no cure and whilst there is a lot of research into potential treatments, there is still so much
more required to reach a point where treatments are readily available to treat DMD and enable our
boys to live longer, healthier lives.
About 100 boys with Duchenne muscular dystrophy are born in the UK each year and there are
about 2,500 boys and young men known to be living with the condition in the UK at any one time.
For the general population, the risk of having a child with Duchenne muscular dystrophy is about
one in every 3,500-5,000 male births.
Further information can be found here:
Duchenne muscular dystrophy (DMD) - Overview | Muscular Dystrophy UK
About Duchenne | Duchenne UK
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