Trickett Fewell Wendler, diagnosed in June of 2013 at age 39.
Died March 18, 2015.
We have a family tradition at every dinner, each person shares their personal high and low for that day. I remember my youngest’s first attempt was such adorable nonsense, “My highs are my highs and that’s my lows. All done, mommy.”
But last month that same little girl, now six, said innocently and matter of factly, “My low is that mommy has ALS and will be in a wheelchair for the rest of her life and die.” We were in shock. We try so hard to keep our focus on the hope…we were at a loss for words. After a few silent tears I replied, “Now wait a minute, yes I have ALS, but what’s important is that we focus on making each day matter and that mommy is fighting.”
Diagnosed June 20, 2013, I was literally taking Zumba classes in March and then in a wheelchair by July. In May, I had my first undeniable symptom that something was wrong. On a business trip I felt too tired to stand, started limping and was in pain for no apparent reason. I was a healthy 39-year-old, celebrating 10 years of marriage, and attempting to balance a successful career while being a good mom to our three children. After two months of tests and doctor visits, I was told they had ruled everything else out, and I had ALS. I would become a younger face with a younger family than is typical with ALS; a reminder that ALS is nondiscriminatory. This nightmare disease considers everyone fair game.
Now I am in a .0001% club. Sounds like winning the lottery, except it’s not. This barely visible club is made of the estimated 25,000 people in the US who share my disease. And double whammy, I have a rare familial ALS…the notorious fast progressive SOD1 gene. What does that mean? I couldn’t help putting words to the letters…SOD1…Sick Or Dying 1…Slow Overwhelming Death of 1…but the name doesn’t work. It’s not just one. ALS, to me, feels like my body is taking my mind hostage. But Familial ALS is like a family curse; my children, my brother, my cousins, my aunts…they are all on the kidnapper’s list.
Trickett – I have been following your story for a few years (I discovered you through Team Gleason website) and have also donated to ALS Foundation. You are a beautiful person inside and out. The energy and spirit that you put out into the world is palpable. May happiness and joy be your constant companions. Hang in there – the world needs you.
Dear Trickett,
I am also on the kidnaper’ s list. My sister had it at 26, my niece at 23 and her son at 23 also. Needless to say we are all petitioning hard to Accerated GM 604 to pass now. We cannot wait for this med to be available without delay. I am very active to ask people to write to the FDA regarding this. Keep your hope up.
My children’s father has ALS. His family has buried 15 and have 7 currently diagnosed. I have watched this disease destroy a family one member at the time. We have two children and I pray every day for a cure. God bless all of you!
Trickett you are a light to many and always will be ❤️ #CureALS
Our hearts are with your family and blessed friends
Please tell me who I write to get this much needed drug
I’m in it to help in any way I can!!
Melissa Miller
Melissamillersells@yahoo.com
I am so sorry for your loss. Her posts have been a delight to read. What a awesome person. She was also a fighter I am Jodi Oliver’s aunt and as you know fighting ALS. Your mom and wife can now walk and her pain is gone. May Heavenly Fathers blessings be yours always.
Heartbreaking.
does anyone wonder why the u.s. can have military bases all over the world, the largest military budget in the world, and thousands of beautiful people dying b/c lack of research on als?
dare we demand the presidential candidates address this?