Robbed by Mystery Disease Family Seeks Grant for Financial Relief

by Jeanene Sutton
(Hickman, TN, USA)

Jeanene seated in family picture at Christmas, unable to take power chair.

I am a 46-year-old wife, mother of three and grandmother of two. I live in Hickman, Tennessee, a remote rural area near Carthage, TN.

I have been working for more than 25 years. Now at a time in my career when I could reap the benefit of so many years of experience I was stricken with a terrible debilitating disease.

I'm unable to walk, unable to work and unable to realize the rewards of my hard work. Instead I find myself asking for assistance instead of giving assistance.

About a year and a half ago I started experiencing over 18,000 heart palpitations a day, weakness in my legs accompanied by muscle spasms, myoclonus (twitches and jerks), and severe pain.

I saw my family doctor, a cardiologist, endocrinologist, and finally a neurologist. The neurologist did finally determine that it was a neurological condition; however, he has been unable to diagnose up to this point exactly what my condition is.

I am now using a wheelchair and seven different prescribed medications to control my symptoms. These medications include high doses of anti-seizure drugs, muscle relaxers, and pain medications.

Due to my physical limitations accompanied by the side effects of these strong medications, I have become unable to work. I have applied for social security disability and am now in the final stages of the disability determination process.

I have acquired a power wheelchair as well as a manual one. However, I cannot afford the ramps and lifts to be able to get the power chair in and out of my house and vehicle.

Because of this, the tools meant to keep me mobile and independent are of little effect. I am forced to depend on public chairs instead of the one best for my condition.

The tires on my husband's vehicle he drives to work need to be replaced to make it safe to drive. The cost for tires is $400. The radiator in my vehicle has ruptured and the air conditioning compressor has stopped working.

The temperatures here have been over 100 degrees making an air conditioner a necessity instead of a luxury. These repairs will amount to over $600.

The house we live in was built in 1897 and though it has been restored, in the past few months, the floor joists are coming up through the floor. Without expensive repairs, my home could be compromised and unlivable.

I have broken two molars that I cannot afford to have repaired and have three other missing molars that need a partial denture to replace.

My current debts that were easily manageable in a two-income family have become insurmountable for my husband's single income.

I still owe for part of my $3,500 wheelchair and am still paying for testing performed at Vanderbilt's Neurological Clinic, Quest Diagnostics, Southern Hills Hospital and St. Thomas Hospital.

As I said before, I have applied for social security disability; however, if approved, this will not replace my lost income or provide the finances for my current needs.

Up to now we have received no aid. I would appreciate any assistance possible to offset these expenses. The stress and anxiety these financial burdens cause worsen the symptoms of my condition.

Thank you for your thoughtful consideration in providing help for me. Managing the disease in itself is difficult; being unable to meet these needs is devastating.

We need help and because my husband has a job, we have nowhere to turn.