Lets talk about the bittersweet reality of Connor turning 7 and what living with Duchenne is really like.
Today, Friday 1st February, Connor will be turning 7 years old. But birthdays in our house aren’t always filled with joy and excitement at the thought of turning another year older. For Emma and I, the prospect of Connor’s birthday is met with rather mixed emotions.
Celebrating a birthday in the world of Duchenne means that we know we are getting closer to that dreaded point that fills every Duchenne parent with the deepest sickening pain. Pain that breaks your heart into a thousand pieces. But yet, Connor is so super excited we can’t let this pain show through. Sure, we shall be joyous and we shall have a party, we will have fun, but that doesn’t get us away from the reality of what living with Duchenne is actually like. Each day of being older means a day of lost muscle function and a day closer to Duchenne taking over.
Duchenne is a fatal genetic disease which means the body does not produce dystrophin, a protein required for muscle strength and function. Lack of dystrophin leads to loss of ambulation, which leads to loss of upper body function and then cardiac and pulmonary failure. Connor isn’t likely to live beyond his mid 20’s. To say that every part of Duchenne is utterly tragic and massively upsetting for us would be an understatement.
Ultimately, we are getting closer to that awful moment where (we have been told) what life will look like. Up to until this point, Connor has been in his prime and to those who didn’t know about Connor’s condition, you wouldn’t really know he suffers from Duchenne. Not the life we had planned nor dreamed of.
But we have hope. Hope that a cure is on the horizon. There are clever scientists and clinicians working their absolute socks off to save the lives of our son and all the other boys like him. We know they are making great progress to find a drug that gets the body to produce dystrophin and produce this missing protein. But, of course, this is a costly business. That’s why we created ‘Chasing Connor’s Cure’, the charity was created with one clear mission; to fund and accelerate finding a cure to #EndDuchenne.
So, it’s for this reason I shall be participating in the ‘Duchenne Dash’ for the third year running. The ‘Dash’ is a cycling fundraising event organised by Duchenne UK which sees some 150+ cyclists cover the 300 kilometres from London to Paris in just 24 hours finishing at the iconic Eiffel Tower. Chasing Connor’s Cure is a family partner charity that feeds into Duchenne UK which in turn fund research, clinical trials and also funds doctors & nurses in the UK to deliver these trials. They work endlessly to work with regulators to get various drugs approved. Not only that, but they also provide Emma and I with some amazing support. They understand the challenges that we face given that both of the founders also have sons with Duchenne.
Connor’s older brother, Harrison, also wanted to undertake a challenge to help fundraise. Harrison is the most kind-hearted, endearing, mature nine-year-old going! Not only has Harrison donated his pocket money in the past to ‘Chasing Connor’s Cure’, he would now like to cover 300 kilometres (the same distance as the Dash) by completing 465,000 steps over 24 days commencing today, on Connor’s birthday, 1st February. If your child would also like to join Harrison on this challenge, then please get in contact and we’ll provide a link to set up your fundraising page. And should you raise over £20 we shall provide you with a FREE Chasing Connor’s Cure snood. Just email us when you’ve reached £20 on chasingconnorscure@gmail.com.
If you would like to get involved and become one of Connor’s Crusaders then we’d naturally love to hear from you, please email us at– chasingconnorscure@gmail.com. Or if you’d like to sponsor Harrison on his step challenge then you can do so here.
So, here’s to eating birthday cake for breakfast and living every moment to the max. Please, let’s continue to fight for Connor and boys like him to give them the future they deserve.
Thanks for reading, Matt
