I am the eldest daughter of Sarata Sambou. Here is her story:

It came as soon as it went.

One minute, she is walking my 8 years old and 10 years old brothers to school. A school that was a mere 15 minutes away.

The next, it takes her 3x as long to take them as she struggles to keep pace. She told me how they would walk back to check on her to see if she was ok.

One minute, she would get on the hydraulic bus with ease. Stopping to help those struggling to get on the bus or getting up when they needed the seat.

The next, she takes a step on the 12" - 14" platform only for her legs to give out. She was trying so hard to get on by herself. I asked if she needed help shortly before the fall but she refused.

One minute, she would be brushing her teeth and waking us up to get ready for the day. She would get up at the crack of dawn and open all the windows because "The breeze from heaven was outside" (Senegambian Proverb for importance of waking up early and starting a new day).

The next, I watched as she struggled to hold her arms up and to hold the tooth brush as she is brushing her teeth. 

I watched my mother go from being a vibrant social butterfly who loved her children, cooking, and did her best to make the world a better place to becoming a shell of herself.

She would tell me about her dreams of becoming a chef, wanted to see me and my siblings get married, wanted grandchildren, and taught us everything we know about patience, gratitude, and resilience. She taught me how to crochet, to hand sew, bought me my first sewing machine and mannequins, and would encourage me to follow my dreams. She loved playing practical jokes. One time, I came home from Uni to discover 2 giant multi leg bugs on my bed. I screamed at the top of my lungs thinking they were tarantulas... but they weren't moving. When I looked closer I saw they were plastic ants. I thought my brothers put it on my bed to trick me and was ready to scold them for leaving their toys on my bed.  I turned around to see my mother standing outside my bedroom door giggling. It was at this moment that I realized it was her. 

She started to lose her muscle tone and strength as time went on. She hated the fact that she looked so frail and was losing her independence every single day. The most devastating part was seeing her become visibly distressed when she couldn't offer a hug or a kiss like she used to. She was fighting a battle that none of us were prepared for. Before any of us were ready, it was over.

Aftermath:

It's been 5 years since she went back home to God. 5 long years of me being afraid to share this experience of what it's like to be a loved one of someone battling ALS. 5 years where I am finally taking action towards something I believe in. On June 7, 2026, join me and thousands of people in the Walk to End ALS hosted by the ALS Society of Canada. The "Sarata Sambou Society" team was created to honor my mother and every mother who live with or have been impacted by ALS. Please consider supporting us by joining our team! I will be wearing her favourite colour: purple. You are more than welcome to do the same. You may also show support by donating to our team page. Here is what your support does:

1. Provide wheel chairs, CPAP machines, and other equipment that are critical in improving the quality of life for those living with ALS.
2. Empower and educate the children, caregivers, and loved ones of those living and impacted by ALS.
3. Offer community based programs such as support groups, virtual programs, and information resources needed in creating a better day-to-day reality for people and families living with ALS.
4. Invest in the ALS Canada Research Program, a program dedicated to funding the scientific research of ALS. Being the sole national dedicated source of funding for ALS researchers, it's critical to keep the momentum going in finding a cure. The more these scientists are able to research into ALS, the sooner we can find a cure and rid the world of ALS for good.

Every step counts. Every minute counts. On June 7 2025, let's #Steponit for an ALS cure.