Guest Author: Jamie Cindia Bolek

May 1st began ALS awareness month. 
Coincidentally, May 1st was also my 46 year old husband’s funeral. 
ALS took him just 1 and 1/2 short years after his diagnosis. 
He left behind a 7 year old son and 14 year old daughter, along with myself, his wife and caregiver. 
My husband died fighting to breathe, even with a ventilator, 
while we could only watch and try to comfort him that an ambulance was arriving soon to help. 
As terrible as this was, Scott is considered one of the lucky ones in this ALS nightmare. 
Scott could still talk and swallow. 
He still had enough core strength to allow him to sit in a power wheelchair daily and eat. 
All of these things are stripped from ALS patients as the disease progresses. 
Only their brain is left unscathed housed in a body that they have no control over. 
That is my definition of hell on earth after seeing it firsthand.
Any one of us could wake up tomorrow and start exhibiting symptoms of ALS 
because we don’t even know what causes it!! 
Every 90 minutes someone new is diagnosed with ALS. 
They are children, twenty somethings, moms, dads, brothers, and sisters. 
Over 30,000 people in the US have ALS and all of those 30,000 will die. It is 100 percent fatal. 
I am so impressed by what our country is doing for a virus that has a 1-5 percent fatality rate. 
Meds are being fast tracked, research is being done, and action is being taken...fast. 
My hope is for those same efforts to be used to learn about and fight ALS. 
There are drugs that have been stuck in clinical trials for years that are 
showing great promise in slowing the progression of ALS and in some cases reversing it (Nurown). 
We need to fast track these and approve the right to try for these terminal patients. 
What do they have to lose? Giving ALS patients this small bit of hope will do wonders.
I had no idea what ALS even was until my husband was diagnosed and given his death sentence. 
Sharing my family’s story brings the hurt to the surface again but 
I hope that this will be shared over and over and awareness will be raised and action will be taken. 
I don’t want others to have to endure what my family has❤️