Family Plans Fundraiser For ALS
By Kevin Gray
In June 2010, Chris McCoy of Osawatomie was losing strength in his left hand. His wife Wendy, said “His left hand wasn’t listening to what he was telling it to do.”
A doctor’s visit and tests revealed a pinched nerve in his left elbow, and surgery followed in September. “The nerve needed to be moved, and he was told it would take up to six months for his hand to return to normal,” Wendy said.
More tests followed in January. “His hand was worse now, more loss of strength in his left hand and arm, and Chris had fallen a few times,” Wendy said.
A central nervous system diagnoses followed, and Chris was referred to a doctor in the ALS clinic at the University of Kansas Hospital.
“ALS. Three little letters. Amyotrophic Lateral Sclerosis changed our lives in February 2011. They confirmed the ALS diagnosis,” Wendy said.
Also known as Lou Gehrig’s Disease, ALS occurs “when the nerve cells of the brain and spinal cord that controls voluntary muscle movement waste away or no longer send signals to the muscles,” according to PubMed, an online publication by the U.S. National Library of Medicine.
Normal everyday activities, Wendy said, like getting dressed by himself, making his own meals, showering himself and picking himself up after a fall are now impossible.
“He walks very slowly with a cane, so a power chair has been ordered for him. We have made changes to our home by widening the driveway and adding a ramp. We are shopping for a wheelchair van,” Wendy said.
The McCoys will host a fundraiser, dinner and auction at the Osawatomie City Auditorium on Nov. 11, a Friday and Veterans Day.
“I’m nervous about this, but Saturdays have been booked at the auditorium for a while. We didn’t want to do this too close to Christmas and are hoping to avoid freezing weather,” Wendy said.
ALS does not affect the mind, Wendy said, but, eventually, he will have problems breathing, swallowing and chewing his food.
“Basically, it’s just a matter of time until he becomes locked in. He will not lose feeling anywhere in his body. I can’t imagine a worse disease to have,” Wendy said.
An application to Home and Community Based Services (HCBS) through Social and Rehabilitation Services (SRS) has been filed, Wendy said, which would provide in-home care to help her.
“My back hurts, but what do I do when he needs to get up out of a chair or the toilet? He has a lift chair in the living room that has helped us a lot!” she said.
Chris will soon be on a waiting list for two to three years, Wendy said, for SRS benefits. “It is through Medicaid. His spend down is more than $8,000 every six months until he gets on the HCBS program (not the waiting list),” she said.
The HCBS program, Wendy was told, may not have enough funding, and there had been no waiting list just a few years ago.
“I doubt we will ever be able to take advantage of this since the life expectancy for an ALS patient is two to five years after diagnosis,” Wendy said.
Rilutek, the only FDA medication approved for ALS patients, extends by a few months the amount of time until invasive breathing treatments will be needed.
Without insurance Rilutek costs $1,000. Insurance through previous employment paid for Chris’ prescription with a $100 copayment, but they lost this insurance Sept. 30.
Medicare covers about half of the medication, leaving Chris and Wendy with a $500 plus portion to pay monthly.
They are applying through the National Organization for Rare Disorders (NORD), Wendy said, to see if they can provide this medication free of charge.
A union carpenter before he became disabled, Chris is fully vested, but he has not been in the union long enough to draw his pension until he reaches the age of 55. He is currently 35.
“He probably won’t make it to 55. Medicare starts when social security disability starts for people with ALS. Good thing for us,” Wendy said.
Chris and Wendy have three children: Tony will be 11 on Oct. 18 and is a fifth grader at Trojan Elementary. Christi and Josie will be six in December and are in kindergarten at Swenson Early Childhood Education Center.
“Our children have insurance (Medicaid) through the state now, but there is no insurance for me. I take more than two prescription meds, so I will be rated by insurance companies, and I cannot afford insurance,” Wendy said.
SRS informed Wendy just days ago that they cannot help. “I was going to try to work part time to pay for a wheelchair van. They are so expensive! I’m sad and frustrated at mostly everything,” she said.
Because of the rare nature of ALS, Wendy has found out how little most people know about the disease. “ALS is not like cancer. There are no stages,” she said.
The McCoys encourage people to stop by the auditorium on Nov. 11. “We are going through a lot. I still wake up, sometimes, and think this is all a bad dream,” Wendy said.
Chris’ family will host the fundraiser and will be cooking along with family friends. Tyson Foods, thanks to Rachel Badders who works there, will be donating the chicken.
Chris has a huge family. He is related to the McCoys, Brandts, Brewers and Razos.
The dinner will consist of chicken and noodles, beef and noodles, chili and a hog. “The food will be cooked by the McCoy family with the exception of the hog, provided by Rocky and Renee Keele,” Wendy said.
Family and friends, Wendy said, are joining in to help however they can. “I think they really want us to have to do as little as possible for this, but I have such a hard time letting people do things for me,” Wendy said.
To help with accessibility to their home, Wendy said, more friends pitched in to tear out the old driveway, widen the new one, and pour new concrete.
“The new city manager and the building inspector were so helpful about changes to our property, even though we were 35 percent over the green space rule,” Wendy said.
“Kincaid Ready Mix gave us a great discount on the concrete, and driver Lance Courtney donated his time on a Saturday to deliver it,” she said.
Those pitching in to complete the driveway were Chris’ friends, Perry Hughes, Tom Graham, Eric Alcorn and Jake Scherman. Chris’ brother Jeremy, his father Buster, and uncle Randy McCoy helped on the driveway, as well as building a ramp.
Free State Timbersmiths Inc. from Stilwell, owned by Matt Smith, donated use of a skid loader to take out the old driveway.
Perry Hughes, who works for Smith, will make furniture items for the auction. “I think he plans to take our son home a few times and let him make some things, too. This way our son will feel involved,” Wendy said.
The women who make up the city of Osawatomie office staff brought food for both weekends it took to complete the driveway and ramp, Wendy said.
“Janine Sullivan, who works at the city offices, brought a lot of food! Twice! Her mom Joyce Maxwell brought food also,” Wendy said. “We feel very blessed to have a supporting community.”
Assistance for this fundraiser also came from Trojan Elementary principal Jeff White, who offered the McCoys the use of the school building.
“But we decided to hold it at the city auditorium, and PIE mentioned us at their last meeting,” Wendy said. “PIE had great fundraising ideas for us, too!”
Both Chris and Wendy appreciated the community support already being shown by the teachers and staff members at Swenson and Trojan Elementary.
“We have always been involved with the kids in school and sports. Chris coached our son’s soccer team before this happened.
“We don’t plan on letting this disease stop that. We will just have to be more creative in our interactions and assisting,” Wendy said.
The McCoys have set up an account for monetary donations at First Option Bank. Donations can be dropped off for “Chris McCoy’s Care Fund” at any First Option Bank location or mailed to P.O. Box 277, Osawatomie, KS 66064.
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