Moving for Margot - my first attempt at the Coast to Coast mountain run!
Please help me support Margot my 1-in-a-billion PCH6 Princess
Canterbury
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.
Latest update
That’s a wrap 18 April 2021
Last weekend I completed the second and final (for now) running challenge on my journey to share my daughter Margot’s story. The Arrowsmith Highcountry Marathon was an epic adventure, made even more challenging by the constant rain and waterlogged tracks! In those conditions it was easily comparable to the C2C run. Full credit to those who helped me get to the start line, particularly @francestoulmin and @dougalallan who made sure I was prepared enough to enjoy it!
The support and feedback my family and I have received throughout has been inspirational, and has not only helped me cross the finish line, but also achieved our goal of sharing Margot’s story far and wide and creating new connections and opportunities globally. Your support has enabled us to get Margot a bike trailer, which will be modified to provide the support she needs. We have been connected with multiple families facing similar challenges around the globe thanks to those who have shared the story. In a few weeks, Margot will undertake a 2 week intensive physical therapy programme at home (with a therapist from Auckland that we have connected with) and in a few months, Frances and Margot will travel to Australia for a further 3 week intensive physical therapy programme. None of these opportunities could have been achieved without your support.
Thank you everyone, we are forever grateful! #movingformargot
Latest donations
Thank you very much for your generosity and support.
Thank you so much for your generosity and support. Hils & Rhys are such amazing friends. 😘
Thank you very much for your generosity and support. We are very grateful X
Thank you Brett for your support of Margot and Dougal. Such an awesome thing Dougal did for her. We have lots of therapy lined up for Margot in the next few months so are so grateful for the donation. Enjoy that bib! X
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