By David Taylor.
In May 2018, our son Edward (who was 2 ½ at the time) was diagnosed with Duchenne Muscular Dystrophy. I have struggled with many aspects of life since the diagnosis, including the following:
- Overcoming and accepting the diagnosis
- Anxiety and depression
- Difficulties at work after telling them about the situation (I had to move jobs twice because of it!)
- Losing my temper with people about trivial situations
- Dealing with the information overload you are faced with
The list goes on! Instead, I want to share some of the positive experiences I have had over the last 2 years.
Lots of running for Action Duchenne
I started running the year before Edward’s diagnosis and found inspiration to run long distances, to help fundraise for Action Duchenne. In September 2018, I ran the Vale of York half marathon (a local event) and the Royal Parks (London) half marathon the following October. That is right, two half marathons in the space of about a month! For someone who struggled to run to the end of the street 18 months beforehand, I was really proud of my achievement.
I ran the Royal Parks Half Marathon with Lizzie Deeble, who also has a son with Duchenne. Lizzie was finding it very tough towards the end of the run with about 3 miles to go.
I could have easily continued ahead of her to achieve a better time than the Vale of York Half Marathon. However, I chose to stick by Lizzie as I felt it was more important to help her get to the finish line. I feel prouder for helping Lizzie than achieving two half marathons in a month!
In October 2019 I went that little bit further and completed a full marathon! I almost gave the towel in at mile 16 but I kept going. I walked the majority of the last 10 miles, but importantly I got over the line. Who inspired me to keep going? Our son, Edward!
I’ve experienced a bucket collection
Edward’s uncle is a Rugby Union player. He played for Newcastle Falcons and now plays for Sale Sharks. At a Newcastle game, on a cold, rainy day, I helped with a bucket collection at a Newcastle home game.
It was a great day, with help from family and friends. From memory we raised over £500! It’s so easy to think of ways to raise money. You can do anything. We all do not have to run marathons to raise money!
Made great friends!
Everyone that works at Action Duchenne is amazing and can never do enough for you. They’re always just a phone call away if you ever need anyone to talk to through what seems a horrible journey. Several of them are parents with a child with Duchenne. Every conversation I have with them, I always end it smiling!
You have an opportunity to meet members of other families going through a similar situation, especially at the annual conference. It is good to talk to others for a variety of reasons. You realise you are not the only one and get first-hand information that can be extremely useful.
In January 2019 a group specifically for dads was formed. We all met up in London for the very first Science School and a beer after. I made some great connections. We have started having Zoom chats every other week now! If you are a dad and want to join in, get in touch with Action Duchenne and they will point you in the right direction!
I appreciate life more
I now never take life for granted. Every day I feel lucky to have the life I have (words you never think you say at the beginning of the journey). Edward provides me with so much joy in life!
Although Covid-19 has frustratingly put a halt on our fun, we normally do lots of fun activities, whether it be his favourite indoor play centre or a trip to the zoo or theme park!
It makes you realise that life is short and should live every day like it is your last! I try not to think too much about what will happen in the future.
You learn alot about Duchenne
A mistake I made was diving in too early to find out as much as I could about Duchenne. In the early days of diagnosis, it all got a bit too much for me. I therefore stepped away from looking into Duchenne for a few months (only taking on board what our doctor told us). In hindsight I wish I had waited.
Once you have given time for the diagnosis to truly sink in and you feel ready, there is a lot of great information out there from a variety of sources. The information given at the Science School was much easier to understand than sifting through a book all about Duchenne! Neil is brilliant at explaining the minefield of Duchenne in layman’s terms. Unsure what something means? He is the one to speak to.
I could continue the list, but I hope this makes you realise that no matter how dark and challenging things seem, there are many positives. It is important to remember you are not alone on your journey!
Stay safe!
David
Staying active during lockdown
