Please Help Suzy Battle ALS

Suzy’s Story

This has been a very tough year for me.  I have always been an active and independent person.  I began having trouble walking, even a short distance.  I struggled with extreme fatigue and weakness.  After many months of testing, I was diagnosed with ALS, Lou Gehrig’s Disease.  ALS is a fast, progressive neuromuscular disease which eventually causes one to lose the ability to walk, move arms, talk, eat or breathe.  I will become completely dependent on caregivers.

If you are reading this, thank you.  Some of you have contributed to an ALS fundraiser on my behalf.  The local ALS chapter has been gracious in loaning me a few items and will continue to provide some resources for me as I meet the demands of this ever-changing disease.

I am a single mom of two boys, a former teacher who loved my career. I currently live in a two story home with my 16 year old son.  My oldest son attends college.  We have no other family nearby.  It is devastating to know that as one who has always been a caregiver to others, I will soon become dependent on a complete stranger to care for my daily needs.  As I lose my mobility, I must rely on someone else to care for my daily and medical needs.  I will need aid with communicating and eating as this disease steals these primary functions from me.

I have a passion for attending live music events, camping and hiking.  I want to remain as independent, mobile and engaged in life for as long as possible.  I want to continue to celebrate life as long as possible while I battle this monstrous disease.  More importantly, I want to be a mom, attend my son’s soccer games and cook him dinner.

ALS is a very expensive disease.  Out of pocket costs for patients can reach into the hundreds of thousands of dollars.  I am hoping to raise money for some immediate needs.  An electric wheelchair, along with a lift for the back of my car would allow me to attend doctor’s appointments, go to the grocery store, and more importantly, attend my son’s games.

As my body deteriorates, my mind will not.  I will require communication devices, feeding tubes and breathing machines.  While there are many wonderful and dedicated agencies and professionals helping me, there will be expenses and medical bills that they won't be able to assist with.

Please, if you are able to contribute in any way, even sharing this, it is greatly appreciated.  Your love, kindness and support mean everything to me.
  • Deni Galileo 
    • $100 
    • 39 mos
  • William Pennington 
    • $50 
    • 41 mos
  • Anthony DiCarlo 
    • $50 
    • 43 mos
  • Jan Stevens 
    • $75 
    • 43 mos
  • Chip and Patti Evans 
    • $50 
    • 43 mos
See all

Organizer and beneficiary

Jim Lilly 
Browns Mill, WV
Suzy Kurinko 
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