© 2020 All rights reserved
In December 2021 I got Covid. It wasn’t a big deal, no need for any medical intervention other than ibuprofen, but I did feel lousy, and was forced into a period of 10 days rest and contemplation. It was during this time, a radio advert peaked my interest. Walk one thousand miles in 2022. Free to sign up, no actual commitment to anyone except myself… just a personal challenge to help me remove myself from the sofa on a daily basis. Lets face it. 2020 was tough… and 2021 was an extension of that. By the end of 2021 I was weary from it. My physical and mental health had both been challenged (like many people) and I needed something to do. Something to get up for. Something to look forward to. Something to give purpose to my day.
So I signed up!
Starting from Saturday 1st January I will set off (with many others) to walk 1000 miles (1610KM) in 2022. This is about 3 miles a day every day of the year, for my own health and happiness.
“In 2020, our shining 14-month daughter Tallulah Moon had just begun to walk and talk. She lit up our hearts with every milestone, laughing and dancing with her doting big brother, Finn. But then one day her dancing stopped.
Very suddenly, her legs stiffened. Her previously confident stride faltered; her tiny feet began to tip-toe, trip and scissor.
We tried hard not to panic as she resorted to crawling again. We rushed for immediate medical advice but nobody could quite say what was happening. We were scared, but we were also naïve. We couldn’t imagine anything “really bad” happening to our child. Meanwhile a tiny genetic mutation was giving rise to an insidious disease.”
“Although each genetic disease is rare, collectively they affect almost 1 in 20 people. Despite this, rare genetic diseases don’t attract the attention of big companies who have the money to fund research to find treatments and cures.
Our Moon’s Mission is committed to finding a cure for SPG56 through dedicated, results-driven research. With your help, we will give children affected by SPG56 a better tomorrow.
When our beautiful Tallulah Moon was born into this world in 2019, she arrived chubby, healthy and happy. We were blissfully unaware that one tiny glitch on one of her 30 thousand genes would one day give rise to an insidious disease. In 2020, it did.
By 2021 our year of terror had turned into acceptance and we came to grips with the painful diagnosis of SPG56. Despite the heart-breaking and vague prognosis of this degenerative brain disease, we were compelled to find a better outcome for out daughter. We wanted a cure for this incurable disease: we wanted to give our daughter the life she deserved.
We spent many months researching different gene therapies, meeting with scientists and interviewing genetic institutes around the world. Hope grew stronger as we stepped eagerly into a world of genetic science: toward scientists directly involved with success stories for other genetic diseases.
Carefully, we built Tallulah’s very own research team. Now we have a coherent team engaged in different, but critical, aspects of the science needed to identify and develop 2 programs to find a cure for SPG56.
In June 2021 our family funded for research to begin. A gene therapy and drug discovery project to cure SPG56 took off in Australia and the USA. Our Moon’s Mission was taking shape but we needed to secure future research to make the mission possible.
In August 2021, we established a charitable foundation called Genetic Cures for Kids. This volunteer-led charity is now propelling our mission forward – to raise awareness and more funds to continue these dedicated research projects and find a cure for SPG56.
I love New Years Day. It is by far my favourite day of the year as we wake late and ease into the day. I have a personal tradition of going for a walk on the first day of the year, just to absorb the atmosphere. The whole day is like a late Sunday afternoon, people are walking slower, smiling more easily, and if they choose to do something… that something is usually fun… and purely for pleasure.
This day last year was gloriously sunny, and particularly bright and shiny, as a layer of snow had descended a few days before, slightly melted and refrozen into a bumpy skating rink. It was also freezing cold. We usually walk into town and end up at the pub for a yew dears day afternoon beer and bowl of chips… but last year the pubs weren’t open.
Todays weather was unseasonably warm.. ridiculously 15C and really windy. And I went on my own, as I couldn’t coax the teenagers out of the house.
I decided to head into Edinburgh, without any real plans, and as it turns out, the day unfolded perfectly.
I witnessed “good morning” in the afternoon, and a “goodbye, let me know when you’re home safe”, a morning after a big night fight, followed by a pause for a cuddle. A beautiful boxer dog puppy, and a moment of pure tenderness between a father and his baby.
Runners running, walkers walking, families spending quality time together, elderly couples strolling, people nursing coffees, and others tentatively clutching bags of takeaway food.
Every outfit from gym kit, to winter woolies, to shiny dress and heels.
Abandoned bottles, masks and meals, both before and after consumption.
And about half way through, I was kidnapped from my walk by a friend, and spent a lovely time having a coffee and chat before we continued on our way. (As I said, perfect unfolding)
Day 1 is a wrap.
Distance Walked: 5 miles (8.19km)
Progress: 5 miles (8.19km)
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