Anne-Marie Barnes

Hello everyone,


I like doing daft things, sometimes I end up with humongous bruises, but the end result is that I have thoroughly enjoyed myself.


So, on the 18th September 2016, I will (in the words of my dear husband) chucking myself out of a perfectly serviceable aircraft.
I am paying for the jump myself so everything that you donate will be going straight to the charity.
It is a really great cause.

In 2013 during a routine visit to hospital that Felix, one of four children, and a twin, had an incurable terminal disease, DMD.... nothing... nothing at all can ever prepare, or help you, to hear such heartbreaking and devastating news.

Felix is our beautiful, amazing baby and before my eyes I imagined a devastating future for him. You feel the sadness of losing him before he has gone. You see the sadness in the eyes of his brothers, when they realise the limited future of their best buddy. You fear for him being in a wheelchair in a playground, his friends running around kicking a football. You are sad that he will not catch the girl in kiss chase.

However, Felix is an amazing, strong, normal cute 5 year old. He loves to scoot around the garden, wrestle with his twin brother, climb on the kitchen bar stool and strain to open the fridge, pinching chocolate (when you think he's quietly playing with his ever growing box of toy cars). His brothers adore him, they cuddle and tickle him and life is all good.

We did fear the future because of what it may hold for Felix, the unknown, the things that may happen... the things that won't happen. We are now learning to embrace the future, because it's in that place that help and medical advancements are; for Felix and all the children with DMD.

This awful disease is being overcome. On the horizon are many new products, new research, new advancements that will beat it. They are so close that parents with children with DMD can almost touch the future.

And that's why after hiding and crying and keeping our pain locked away, we now see a future not to be feared: it's to do something, it's to raise money, to make people aware, to fight for Felix and enjoy the future with him.

So with the help and support of our great family and friends TEAM FELIX was born. Raising money as quickly as possible to fund treatments in time to save Felix and all like him with DMD.

We’ve been involved in some fantastic events

In 2014 our first event saw 93 supporters tackling the National 3 peaks challenge and raised over £60k for Joining Jack. Since then they’ve been involved in:

Climbing Kilamanjaro, Running the Manchester 10k, The Great Manchester Cycle Ride, Cycling from John O’Groats to Lands End, Cape Town Great Cycle Tour, Musical evenings, JJ Kiddie Climb, Felix’s Fiesta (a fab night of eating, drinking and fundraising). Felix’s school, St Vincents, have now started helping our fight with their Lenten fundraising and school ball. We can’t thank you all enough!

Devastatingly, Felix’s daddy died last November. One thing that sticks in my mind though, is that no matter how horrendous the last few months were for him he said,

“If Felix could have my life it would be a dream”.

I think this symbolises the total devastation this disease brings to the boys and their families.

So now, the only thing that keeps me going is Hope. Hope, that treatments can come quick enough to preserve Felix’s quality of life. Hope that he can gain access to these treatments before he is no longer walking. Hope, that he has a chance of keeping up with his brothers and lead a longer more normal life. Hope, that the Duchenne community get a chance to save THIS generation of boys with Duchenne…

Great things never happen by holding back, so please don't: please donate what you can. Or fundraise with us and for us. It all helps and it feels great to do something.

Anne-Marie Barnes