Moving for Margot - my first attempt at the Coast to Coast mountain run!
Please help me support Margot my 1-in-a-billion PCH6 PrincessCanterbury
Those of you who know me well, will know that I don't often ask for help. Today, I am asking for your help, not for me, but for my youngest daughter Margot.
2 years ago, Margot was taken into hospital with seizures. These seizures then resulted in status epilepticus (prolonged seizures). She was unresponsive to the 8 or so doctors and nurses from the Intensive Care Unit that were frantically working to bring Margot around. As a parent in this moment, I was helpless, there was nothing I could do but sit back and watch the specialists work on my baby girl.
Over a rollercoster couple of years Margot has been diagnosed with a very rare genetic condition called Pontocerebellar Hypoplasia Type 6 (PCH6). She is the only person in New Zealand with this condition and 1 of only around 20 reported worldwide. PCH6 has affected every aspect of her development since birth; such as hearing, vision, speech, and movement and control over her body. Margot's future really is uncertain. With Margot's demanding and complex needs, everyday is filled with therapy, appointments and full time support. Please check out her Givealittle page to hear more of her story.
Today, despite the challenges and setbacks, Margot continues to make me proud of her achievements. I want to do something that I hope will make Margot proud of me. In February 2021, I will be running 30kM over Goat Pass, taking part in the gruelling Coast to Coast Mountain Run event. To back it up, a few weeks later I will take part in the Motatapu Off-road Marathon.
Throughout my journey I will be raising awareness of my daughters condition and others who face similar challenges. I will also be seeking donations to support Margot's continued development through therapy, treatments, and ensure she can access specialised equipment that will enable her to continue joining in on our family activities.
If nothing else, please take the time to share and discuss the impact that a rare genetic condition can have on the life of the individual, their family, friends and community. If you can, please donate....
Everyday we continue to challenge Margot with home therapy exercises to help her one day sit, crawl and even walk. I want her to know that I'm there every step of the way pushing myself for her too. Each step I take may seem insignificant, but combined I'm hoping they can make a real difference to Margot's life journey.
You can follow my training progress here https://www.strava.com/athletes/7479228.
Sam Toulmin's involvement (page creator)
I'm pushing myself, because I know how hard Margot works everyday and I want her to know that we are all in this with her.
After hours and hours of training and clocking up 800kms+ running up hills, over rocks and through rivers over the past 4months, on Friday I finished the @coasttocoastnz Mountain Run, and it was awesome! I proved to myself (and possibly a few others) that all the training/preparation is worth it if you want to achieve your goals. But much like with Margot’s journey once you achieve one goal, it’s time to start focusing on the next. Next stop @motatapu_nz off-road Marathon!
To all those who have shared, donated, commented, liked, watched, or talked about Margot’s story so far, you are all a key part of what we have set out to achieve. Thank you and lets keep #movingformargot
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This page was created on 7 Dec 2020 and closes on 1 Apr 2021.