When COVID-19 fades, Duchenne will still be here. While it takes up most of our news, our thoughts and our daily lives, Duchenne carries on regardless. 

Our son, Sebastian was 6 years old on the 30th May 2020.  He has Duchenne Muscular Dystrophy. He was diagnosed in 2016 aged 2.5 wheelchairs, steroids, splints, specialist equipment and house adaptations seemed a long way off. Now, they are very much a part of our lives along with many other aspects of Duchenne. There are so many more to come. 

Treatment options remain the same as they did when Sebastian was diagnosed - there are none. There is a lot of hopeful research taking place, but Duchenne is complex and it takes a long time.. COVID-19 will only have delayed this process even further. Time is never on your side when you have a degenerative, life limiting disease. 

Along with a team of 4 other amazing ladies, I was due to run the Manchester Marathon in April. As part of our fundraising, we had planned an 80's party which has been postponed for along with the marathon. So instead I am hosting an online 80's themed quiz on Friday 5th June at 8.30pm in honour of Sebastian's birthday and to give us all a bit of much needed fun! 

80's hair and make-up and fancy dress is definitely encouraged. 

A donation to Action Duchenne of any amount is all you need to do to join in the fun!

Action Duchenne has supported my family in many ways since Sebastian's diagnosis. But they are a small charity and have been hit hard by the impact of COVID-19, loosing a huge amount due to cancelled fundraising events. They really need our help so that they can continue to support families like mine, especially right now when Duchenne means that our children are counted among the "extremely vulnerable" and we are trying to protect our children.

The support they offer has never been needed more but now is the time to give them our support in return. 

So find your crimpers, dust off your leg-warmers, pour yourself a large drink and join us to raise a glass to our amazing boy!