Running the Ice Ultra for Mila's Foundation
Hello,
My name is Mila Sarig and I’m 6 years old. I was diagnosed with Alexander Disease 3 days after my second birthday. Alexander Disease is a very rare form of leukodystrophy that affects the central nervous system's white matter, and it is neurodegenerative. This means that my health will decline over time and that I may not be able to do things in the future that I can do today like playing with playdough, smiling, eating etc…. I do not know how long it is going to take and how the decline will look like. All we know is that my clock is ticking and that I will have a short life…unless there is a treatment or a cure!
So my mommy Nahed will be running the Beyond the Ultimate Ice Ultra to help raise funds for research into Alexander’s disease, raise awareness and help other families living with the disease. So please be generous it will mean a lot to me. Now my mommy will tell you a little bit about her race.
After a year of preparation, the moment is finally here. On the 20th February I will be on the Beyond the Ultimate Ice Ultra starting line in the Swedish Lapland. The race is a 230 km self-sustained race over 5 days in Europe’s last remaining wilderness and the heartland of the indigenous Sámi people. To give you an idea you can watch the video below, which I have probably watched close to 100 times before deciding to do the race.
Ice Ultra Documentary
Live tracking link is now live make sure you save it to your favourites.
When I announced back in December 2023 that I was doing the race, many thought that I had lost my mind. I heard it all: “you are crazy”, “you are hardcore”, “even the most experienced runners I know think this is crazy” but the more these reactions came my way the more I was convinced I was doing the right thing for ME.
Those that know me well know that big challenges do not scare me, that I do not like to hear “it is impossible, it cannot be done”. I’m more interested in possibilities beyond the present, I like to hear: ”S*** this is hard …let’s find a way to do it”. And yes I do swear a lot!
So the way to do it was to be coached by no other than a previous race winner (The legendary Simon Dicks at Focused Running). Preparing for the race was one of the hardest things I have ever done. I always loved sports but running, I hated with passion until I discovered ultra running.
There were a lot of setbacks : lost toenails (I wear this as a badge of honour though), 2 times covid, other health issues, a minor surgery, several stays in hospital with Mila. And of course, taking care of my 2 beautiful daughters and the challenges of raising a child with special needs whilst working full time.
It was organised chaos to say the least! So hopefully I will finish the race preferably with all my body parts intact, yes frostbites and hypothermia are possibilities!
I was asked many times about the reasons for doing the race and for many months I really didn’t know how to answer. For me it was beyond just fund raising I just knew I had to do it. But after several months of training and running two 50+ km races and a half marathon…. it hit me. I credit it all to my beautiful daughter Mila, her diagnosis had hit me hard, I went through hell and came out a different person. So, I thought if I can go through that I can go through other hells.
I can write pages (some articles below), maybe a book on the treacherous journey my family and I went through and how that changed me but I will keep this for another time….
In December Mila’s Foundation (Charity number: 1206079) got finally approved after trying for 2 years so this is our first major fundraiser. We have a lot of ambitious goals and are already working on a roadmap with top researchers across the globe which we will be sharing more very soon.
So please donate and share with your extended network to raise our profile and help find a cure for Mila and other patients suffering from this fatal disease.
Yes, I know the objective is steep but one of my mantras is “go bold or go home, anything is possible”
Nahed Sarig, Mila’s mom
a video and some articles I wrote
Co-organizers (2)
Mila's Foundation
Beneficiary
Gil Sarig
Co-organizer