Help With Medical Exp due to ALS

On August 26, 2014 at the age of 44, Jeff was diagnosed with bulbar onset ALS.  We were devastated.  He had always been healthy and very active.  He was a hard worker.  He loved working in his yard and watching Nascar.  He is the father of three beautiful girls and three awesome grandsons.  We have been married a short 7 years and this diagnosis pulled he rug right out from under us.   Due to the fatigue that goes along with ALS and the fact that Jeff was losing his ability to speak, he went on Social Security Disability.  

Fast forward two years from diagnosis...Jeff had lost the ability to speak.  He was forced to communicate using an app on his smart phone.  That didn't stop him from cracking jokes!  Jeff is a big jokester and people person...so losing his voice was huge blow (as it would be to anyone).  He had to have a Peg tube inserted at the end of 2016 due to the weakening of the muscles in his throat.  He was constantly choking on his food and had began to lose weight.  

As you know there is no cure currently for ALS.  In February of 2017, Jeff made the decision to cash in a life insurance policy and head to northern California to see a neuro-degenerative disease specialist.  He went through a detox protocal to prepare his body for embryonic stem cells that he would receive at a clinic in Ensenada, Mexico.  WE made the choice to try treatment out of the box...because the Emory Clinic, where Jeff received his diagnosis, offered no hope.  Unfortunately after receiving the stem cells, Jeff's immune system hit rock bottom and he came down with pneumonia.  It was a huge blow.  He spent 2 weeks at the University of San Diego Hospital in ICU where he received a trach.  He went on a vent at that time as well.  The hospital didn't feel Jeff was up to making the trip home to Georgia after his two week stay in ICU so he was transferred to a transitional hospital in San Diego for a month and later sent to a ventilator unit in Miller County, Georgia for yet another month to allow time for rehab and for me to be properly trained on his trach care.  

The stem cell treatment Jeff received in Mexico as well as the detox to prepare treatment to prepare for the stem cells was not covered by insurance.  We exhausted the insurance money paying for this treatment and our lodging while he received treatment.  After Jeff received the trach, I quit my job to take care of him.  We are now living on his social security/disability and it's tough.  While we have eliminated as many bills as possible..it's still a challenge to pay for all the things that Jeff needs to give him proper care.  We are currently living with his mother and sharing rent with her.  While her apartment is perfect for one person, it's just too small for three people and especially small for someone in a wheelchair.  Jeff isn't able to get into the bathroom in his wheelchair and doesn't have much room to move freely in his wheelchair.  We would love to be able to get into a small place with a stand up shower and bathroom large enough that he could use with his wheelchair.  

Any assistance that we could get to help with his care or transitioning to a home better equipped for his needs would be greatly appreciated but more than anything we need your prayers.  Please remember us as we face our daily challenges and I ask that you pray for peace and comfort for Jeff.  

Donations

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  • Kelli Elmore 
    • $20 
    • 38 mos
  • Cindy Echols 
    • $250 
    • 38 mos
  • Michael Pawlik 
    • $50 
    • 38 mos
  • Carin Williams 
    • $50 
    • 38 mos
  • Michelle Hough 
    • $50 
    • 39 mos
See all

Organizer

Jeff Stacy Long 
Organizer
Canton, GA
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