Why is the Walk to Defeat ALS so important to patients, caregivers, friends, and family?
Even more than the sense of community, love, and friendship on Walk Day, your support of the New York City Walk to Defeat ALS provides much needed care and equipment to patients as well as advancing research for treatment and a cure for this devastating disease. Each of our Walk Teams have their own unique stories about why they Walk each year. We’d like to share one of those stories with you about Team Family United WWL300 who Walk in memory of Francis Torres.
My mother-in-law was a co-founder of a social club named Wunway Ladies. Wunway Ladies is a group of women from the Bronx who help out on many social issues and community events. My mother-in-law was always the life of the party, always wanting to have a great time and be a mentor to many that had the privilege to know her. Everyone called her Mom aka Lady Soulja (because she just loved camo) because if she took a liking to you she would treat you like one of her own. She loved to dance and do silly things to make us laugh.
When my mother-in-law started showing signs of slowing down and complaining of soreness throughout her body, we were very concerned. One day we were walking, doing some shopping, and her legs just gave up on her. We went to her primary doctor and they ran tests on her for weeks. Ultimately it was determined that she had ALS. Once I heard ALS all I knew was that my wife and I had to take care of her but didn’t know what that entailed – she was always the one who took care of us.
When she just couldn’t walk anymore, we had to get a wheelchair and we had to transport her everywhere. She couldn’t eat like she wanted, causing her to be frustrated at times. It was devastating to our family because she was the rock to our family. My daughter simply cherishes her grandma so having to explain to an eight year old what’s happening to her grandma was one of the most difficult things I ever had to do and to this day she still asks when grandma is going to visit me in my dreams. There came a time where I was just worried for my wife because as much as she was staying strong I knew that seeing her mom in this state was affecting her. So I did my research and came across the ALS Association Greater New York Chapter. I just knew I needed some help. Finally I called and spoke with Reagan Swaine who from day one has been a breath of fresh air as she invited us to a seminar to talk about our situation and the options that we have. Honestly it was what we needed to help us try to get through this ordeal.
We were planning a fundraiser to help our team FAMILY UNITED raise support for the New York City Walk to Defeat ALS that we were planning for. The Walk team helped us obtain literature and other items to assist us spread the word in our neighborhood. I made her promise to come and make an appearance to her fundraiser. I knew she was weak but I knew she wanted to see all her friends and family. The day of the fundraiser came and she was there taking pictures with everyone, smiling and just having a good time. We were overwhelmed by the outpouring of love and support that she received and, more importantly, the awareness of ALS to everyone who was there.
Three days later, Lady Soulja succumbed to her fight against ALS. We as a family were devastated and we still are. But I’m happy that she kept her promise to stay and make it to her fundraiser and see the impact that she had on people.
She kept her promise and we will keep ours to help fight for her and for everyone that suffers from ALS. ALS has no race, no gender preference, even if you’re rich or poor. Anyone can get ALS but together we can UNITE and help the FIGHT and maybe one day we can FIND A CURE.
Hope to see you at the WALK in NYC. We will be there! FAMILY UNITED!
Team Family United WWL300