"The whole thing just hurts, doesn't it? Sometimes I look back at my arrogance in the face of this disease, the fact that I thought I was actually going to cure him, and I don't know whether to laugh or cry"
Now I don't totally agree with my friend that said this to me, perhaps though I just haven't yet been beaten up enough by Duchenne, had it rip me open and grab hold of my heart yet. Squeeze the life out of it yet. Chip away at and break my will to hope enough yet.
Who knows, I certainly don't feel like I'm there yet... I still have a burning desire to fight Duchenne and save lives but it is a terribly hard journey that can lay waste to so many lives beyond the devastation it causes to our children.
But, I do recognise the sentiment... my blind determination and belief in myself ignores it... but in those quiet moments when I reflect, I know it's there. How could I not? It's been six years now. Harrison has gone from a four year old boy that could run, jump, hop, climb stairs and get in a car unaided to a 10 year old lad who can barely walk, never mind run, hop or jump... any step, whether a pavement or an inch lip is just way too high and getting up from the floor is impossible. Watching the concentration and the worry on his face when walking about taking a tumble and hurting himself cracks my heart wide open, no parent should have to watch this, no child live it.
I was told recently that having children is like walking around with your heart outside your chest... I can so empathise with that statement but feel like it is concentrated further with a life limiting condition in the mix. Not only are you walking around with your heart outside your chest but it's being broken Every. Single. Day
He seems to now be racing towards a powered chair, it feels like only yesterday that the manual came into his life... for the first year or two the wheelchair lived in a garage, hardly ever out, now it's ever present and goes everywhere. The power chair is not far off, and all that that entails... no more normal cars, the dreaded WAV (Wheelchair Accessible Vehicle) will be another necessary change.
I came across a link the other day to a Bangladeshi father of three boys with Duchenne, who had run out of money, run out of hope, he feels certain his children will die and that nothing will save them in time. Terrifyingly he was asking the Bangladeshi government for permission to euthanise his children, he had got to a point of total despair, and it's harrowing to think that a parent could get to that point.
Here in the West we are more fortunate with options for hope and Harrison was accepted on to a clinical trial at the back end of 2015, I probably mentioned it in last year's duchenneanniversairy blog but it would have been early days then... It's been a hard journey, the protocols have been difficult to bare for Harrison, and that hoped for 'benefit' from the drug has not been spotted. I believe Harrison was on the placebo arm for the first year and is now 'on drug' in year two (it's a double blind placebo controlled trial) but I am yet to see any benefit. That's the thing about clinical trials, with a disease with so few options, they are your holy grail, they are that chance to make a meaningful difference to the life of your child, and then hopefully the lives of many children. But, a clinical trial is research and research is exactly that, no guarantee, no definitive answer at the outset, just a prayer to whatever you believe in and then a wait to see some ability change for the better, anything.
Harrison is growing up so much, getting into how he looks, more interested in his hair cut, a mobile phone glued to his hand, chatting online with his mates... he's on Instagram as himself!!
Only this morning he messaged me to ask
Harrison: "why do you steal some of my Instagram posts for your Instagram?
Alex: "Because they were cool and my 1600 followers like to see what's going on in your life buddy, is that ok?"
Harrison: "1600!!! Yeh that's ok"
The social media savvy child of today...
We've had some well documented big wins this last 12 months, The documentary "The Challenge: My Iron Man Dad" hit screens through Discovery on Father's Day, I won the Pride of Sport award for Charity Challenge of the year and a successful fundraising year for Harrison's Fund again.
I'm off to Milan for Italian Father's Day in March (19th) to promote the screening of the documentary on Discovery Italy. Can't wait for this one. I'm going to be a guest on the famous Italian radio show Deejay Chiama Italia, on March 17th and then on March 18th as a guest in the studio for the final Italy game of the RBS 6 Nations live on DMax...
So as I put 2016 behind me.... training has begun for Brighton marathon with Harrison in 11 weeks' time, I'm starting way too late, Harrison plus kit is now almost 60 kilos to lug around and every step of training is far less easy than I remember when super fit before the Denmark Ironman. Two dads and charity trustees are running with me on the day, Nick Taussig and Darren Claughton pushing their boys Theo and Josh too, I really hope we can manage to finish together, boys in front, shoulder to shoulder across the line.
They are the real winners, the real battlers, and our hero's