Hope for the future - Lisa's story
“ 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. ”
In 2013 we found out by a routine visit to hospital that Felix, one of our 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 your eyes you imagine 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 wheel chair 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 beyond belief. 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.
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.
Published on 14 May 2016Share this article Categories Personal stories