On the 18th of June I will be taking on the Montane Spine Race. This is a non stop 268 mile foot race starting in Edale, Derbyshire and finishing in Kirk Yetholm, Scotland. The route follows the Pennine Way and has a time limit of 156 hours.
Racing non stop and unsupported through day and night on what is regarded as Britain's Most Brutal endurance race.
I will be doing this to raise awareness for mitochondrial disorders and the work that the Lily Foundation do as we keep pushing for support in finding a cure to save our Ruby's and many other people's lives.
Rubys has Pearsons Syndrome, which is a mass deletion of her mitochondrial DNA. Most of her mitochondria is smaller than it should be and so doesnt power her organs to work properly. It is progressive as her batteries fail her organ by organ. There is no cure at present, but with more research science can find a cure. Time is against us tho with Ruby.
When I first entered the event it seamed like a great idea. But now I look back everyone deals with things differently in life and Ruby's diagnosis hit me like a ton of bricks. We suffered as a family, trying to come to terms with the the fact that Rubys body is failing, the fear of losing her, the devastation it will leave behind. The pain knowing she is suffering and as a parent all you want to do is make your kids safe and happy. Wanting to take her away from the suffering, let her lead a normal life. Wanting to swap places with her and battle Pearsons myself. Trying to come to terms with the impossible.
Daily trying to find some strength to keep going and being there for the children, but inside falling apart.
It's hard sometimes to put your hands up and say that you need help and can't cope. I hid behind alcohol for a while, living in denial hoping it would take the pain away.
I then entered the Spine Race, to get away from the drink. This then turned into excessively exercising but again all I was doing was to continue to run away from the truth. Sometimes acceptance is the hardest.
Something has clicked of late and I have realised that I need to come to terms with the situation better. Deal with what's happening and stop hiding behind things to take away the pain.
That I don't need these things in life right now. Life is so precious, such an amazing thing but is also so short. Ruby's is going to be extremely short so whilst she is here we will give her the best years possible.
Ruby is one of the special ones in life. She's already defying odds. She fist punches me when she goes for a blood transfusion, nothing fears her. Nothing stops her in her tracks and i genuinely believe she will keep driving and fighting for a few more years yet. I cherish every minute with her and hate being apart.
This makes the thought of running 268 miles alone day and night, being away from home for 6 days not only physically but mentally impossible. However I've done some training (nowhere near enough) but the demands of work and life have made it hard, as well as not wanting to be away from the girls for hours on end.
So I'm going to give it a bash. I want to try and raise as much awareness and support as we can for mitochondrial disorders and this brutal endurance challenge seems the perfect platform to do so.
If you can think of anyway to share what I am doing and the cause then please do. The more exposure and awareness we can raise the more chance we have of finding a cure. If you can spare a few quid that would be great and will go towards supporting families and research into a cure.
Nikki will post updates on social media tracking my progress and any messages of support please send them. This will be by far the most hardest thing I've ever done so will need all the support I can get!
The incentive of getting to the finish line in Scotland and holding my girls and a big Ruby cuddle will keep me pushing on day and night ❤️.
We will do anything we can to fight this and raise awareness for Ruby and her mito family.
