“I will never forget walking in the surgery and seeing the doctor’s face, it said it all, something was seriously wrong. We sat down and he said it exactly how it is: Your son has Duchenne Muscular Dystrophy, he will be in a wheelchair by the age of 5 and have a life expectancy between 15 to 27 years. Every muscle in his body will waste away, affecting the legs most prominently and then progressively to more vital parts of the body – heart and lungs and there is no cure. I had never heard of Duchenne Muscular Dystrophy, most parents that get this diagnosis haven’t.”
On Wednesday November 27th at 4:30pm three members of the 2Simple team will be getting waxed to raise money for Duchenne UK.
Alban Squires, Ian Reid, and Sam de Lange are all very attached to their body hair. So attached in fact, that it’s going to be a tearful parting when it’s torn from their bodies with budget Boots wax strips. But it’s being done to raise money for a cause which is well worth any amount of discomfort.
Duchenne Muscular Dystrophy (DMD) is a muscle wasting disease with no known cure. The life expectancy for people with DMD is 26 and there are over 2,500 patients in the UK alone. Duchenne UK has a clear mission: to fund and accelerate treatments and a cure for DMD, and to do so in a decade.
Alban knows exactly how devasting a DMD diagnosis is because his son Dexter was diagnosed last year. You can read Alban’s story in his own words below. We are doing this for Dexter and all the children and families who need to find that cure – please help us if you can!
Although the cause is serious we wanted the event itself to bring joy. And so, to make things more exciting you can sponsor a specific wax strip, for a specific person... on a specific body part! Just make your donation and leave a comment letting us know who you want to wax and where. You'll then be able to tune in live on Facebook to watch your money in action!
People:
- Alban Squires (Daddy Bear), Ian Reid (Mummy Bear), Sam de Lange (Gummy Bear)
Parts Pricing:
- Chest (£7), Legs (£6), Back (£5)
Special guestBarnett
Alban’s story
On March 13th 2016, the best day of my life had finally arrived; my wife had given birth to a beautiful boy named Dexter. I remember so well somebody telling me many years ago that if you ever have children, you will love them more than anything else on this world, how right they were.
As Jen and I watched Dexter flourish and grow, we had a little concern about a slight delay in his walking but just put it down to laziness. His childminder began to persist that he should have a check-up with the local physio and paediatrics. He had a blood test as a precaution to rule out any serious conditions. A week later on Friday 1st June 2018, Jen was tearful on the phone, telling me that the Paediatric Doctor wanted us to come in and see him that afternoon, blood test results were back! I shrugged it off and said, it’s probably to tell us he might need some medication or some physio. I booked half a day’s short notice holiday and headed off.
I will never forget walking in the surgery and seeing the doctor’s face, it said it all, something was seriously wrong. We sat down and he said it exactly how it is: Your son has Duchenne Muscular Dystrophy, he will be in a wheelchair by the age of 5 and have a life expectancy between 15 to 27 years. Every muscle in his body will waste away, affecting the legs most prominently and then progressively to more vital parts of the body – heart and lungs and there is no cure. I had never heard of Duchenne Muscular Dystrophy, most parents that get this diagnosis haven’t.
I remember just crying for three days solid, unable to eat and think rationally. How on earth were we going to get through this? What happens now? We were both in limbo. No one should ever have to bury their child, this just isn’t right, how will we get out of this? It was a terribly lonely time, no one really gets or understands it unless they are going through it. Thoughts of suicide, hiding somewhere, extreme resentment of others with healthy children all came to the surface. We both spoke separately with mental health experts and it was probably the best thing we both did. We were told we were totally normal, anyone in this situation would think and have fleeting thoughts like this, that was one of the things that started to build us back up. Work was a saviour, it kept the mind occupied and away from the grim reality.
Here we are a year and a bit on. Dexter is an extremely happy 3 and half year old, just loving life, still able to walk but does need support with stairs and climbing. We will now dedicate big parts of our lives to making sure he has everything he needs to maintain complete happiness which includes us being happy and secure. Yes we both get upset still, but not as often and we still have the odd moment of ‘if there isn’t a cure, let’s just hope a nuclear bomb just vaporises us all in 15 years’ time, then we won’t have to think about it anymore.’
We are now stronger than we were before the diagnosis. We see Dexter as a gift, he has actually made us better people. We never wish any day away or long for the weekend. However, we are not content with a no cure situation!
There are fortunately a few charities that are directing funding into finding a cure for Duchenne Muscular Dystrophy (DMD). Duchenne UK is one of those charities that in partnership with others across the world funds vital research into medical research such as exon skipping in genes to hopefully be used to treat DMD patients with the aim of stopping muscle wasting, even possibly reversing it.
If you could donate a few pounds to help find a cure that would be amazing. Spreading the word and raising awareness of this charity is vital for DMD affected children and families.
