'There's plenty of time for a cure!'

 On the Internet, especially on social media, I see a lot of families who have, or have lost, a child with Duchenne.

I see a lot of families of newly diagnosed boys who find it really hard to accept the diagnosis of DMD. I reached out to some and tried to help, and hopefully have occasionally, but I remember when Dominic was diagnosed that it was very hard to speak to someone who had lost a child to Duchenne as that was an eventuality that I didn't want to acknowledge at all. That WOULD NOT happen. Not to Dominic. He was a 3 year old.

I remember when Dominic was diagnosed being told that 'He was young and there was plenty of time for a cure to be found.'
I remember being somewhat reassured by that. After all, medical science progresses all the time, doesn't it?
I remember asking constantly on every hospital visit or phone call
"Is there any positive research news?"
There was occasionally some developments in treating Duchenne but never a cure.

As Dominic got older I asked this question less frequently...I lost hope as the years passed (far too quickly) and didn't want to hear the answer and feel the disappointment. It was almost easier to fear the worst then anything else was a bonus.

Nearly every Duchenne family has been told that 'There is plenty of time for a cure' when their child was diagnosed.
I still hope for their sakes that one becomes available. These amazing boys, and very occasionally girls, don't deserve their lot in life.

I've come off nearly all of the Duchenne pages now. It's too painful for me and for most Mums who still have hope. Hope that there is 'Plenty of time for a cure.'
Who knows! It may happen... but it will come too late for lots of our boys.... and it's too late for Dominic.
Time ran out, a cure didn't come and Dominic is now a much loved, much missed precious Angel ^i^

 Dominic in January 2018 on The Neuromuscular Complex Care Centre in Queens Square, London having his 6 monthly 2 night MOT

Dominic watching his Christmas songs on the AAU in Watford General Hospital on 27th December 2017 after being admitted the day before with a chest infection/pneumonia.