SIDNEY — For a Sidney woman, the hope of what lies ahead in several aspects of her life motivates her to continue a slow, rugged path involving an incurable disease. A successful fundraising effort is underway to help the family obtain a new therapy option.
Jodi Kirtley clings to the hope that a stem cell therapy procedure will bring a semblance of normalcy back into her life. Currently, she fights the onslaught of multiple sclerosis (MS) that is absorbing everything that matters to her.
In addition, a recent setback continues to frustrate the family.
The 44-year-old Kirtley suffers from Relapsing-Remitting MS, which is defined as inflammatory attacks on myelin in the nervous system, according to information on the National Multiple Sclerosis Society website.
Based on the website, myelin is the layers of insulating membranes surrounding nerve fibers in the central nervous system, as well as the nerve fibers themselves. During these inflammatory attacks, activated immune cells cause small, localized areas of damage. Because the location of the damage is so variable, no two people have the same symptoms.
The website can be found at www.nationalmssociety.org.
In layman’s terms, the family says the disease is like old electrical wiring becoming frayed and exposing the conductors of the electric current inside. Unlike repairing such electric wiring with hand tools and new wires, MS permanently destroys the coating of the nervous system. The result can lead to a painful, debilitating condition that robs individuals of quality of life, and many times, contributes to a cause of death.
Hopes are high the stem cell therapy will slow or stop the progression of the disease.
In basic terms, the stem cell procedure attaches healthy cells to the damaged nerves. Kirtley said it’s not a cure, but hopefully will bring the physical hope she has.
Clinical analysis’ aside, Kirtley simply wants the pain to end, and to walk without depending on wobbly legs, walkers and other people. Her hopes to stand, and walk unassisted to welcome her son home from his current U.S. Army stint in Afghanistan are dwindling.
MRI reveals another setback
Another medical device has been implanted into her back that helps her with daily basic functions. An MRI recently during a regular checkup of the device brought bad news. A new lesion has been found and Kirtley has begun a six-week program to fight the flare up.
The stem cell procedure is put on hold until the doctor rules she has overcome the change in condition discovered this week.
With the stem cell therapy, still being considered experimental medicine, insurance companies have denied covering the procedure. This new lesion is also bringing additional medical costs as they must travel to Columbus for treatment.
Kirtley was first diagnosed with MS on May 10, 1998, one year to the date of her marriage to Ben Kirtley. Their journey began when Mrs. Kirtley sought relief from a lingering eye problem. The diagnosis process quickly led her to specialists unveiling the results. For a long time, medication was used to help keep the pain in check.
It wasn’t until 2013, that Kirtley began facing serious life-altering effects from the disease. Hospitalized on her birthday, the family learned Kirtley’s body was rejecting the medicine.
According to Ben, his wife’s body had created an immunity to the medication and lesions were found in her body.
According to the website, commonly referred to a RRMS, the condition is characterized by clearly defined attacks of new or increasing neurologic symptoms. These attacks, also called relapses or exacerbations, are followed by periods of partial or complete recovery (remissions). During remissions, all symptoms may disappear, or some symptoms may continue and become permanent.
Approximately 85 percent of people with MS are initially diagnosed with RRMS, officials report.
Caring a friends and family affair
The Kirtleys have two children. Their son, Mitchell, 22, graduated Fairlawn High School in 2013. After attending diesel engine mechanic training in Lima for a year, he entered the service in 2015. Currently serves the nation in the Middle East as a combat medic. Their daughter, Madalyn, 15, is a sophomore at Lehman Catholic High School, and is involved in volleyball, softball, cheerleading and show choir.
Their home also includes the care for others. Two lovable attention-seeking dogs and “a few” cats were nearby during the interview.
“We’ve had Angel (a larger dog) for some time. Scooby Doo (a Dachshund) was a rescue and is actually Mitch’s dog. We are keeping for him while Mitch is in Afghanistan,” said Jodi.
Ben Kirtley smiled when talking about the cats. The house cat stayed in the background, but he spoke of a stray cat that wondered upon their porch recently.
“Madalyn really started loving up on that cat, so I guess it’s ours now. Last year, during the winter, we had another stray and I put out a heated crate for it to stay in when it got cold,” Ben said.
In dealing with the MS, Jodi remains optimistic in regaining her vitality, and hopes of caring for her family. Ben said he is reminded daily that MS is incurable at this point, but watching his wife suffer has been difficult.
Jodi is high risk for falling. Ben works first shift in Troy and is deputy chief of the Port Jefferson Volunteer Fire Department. He has provided a list of people, including many of the department’s firefighters, willing to come to Jodi’s aid at a moment’s notice, while he is away. Frustrated, Ben said his wife’s pride gets in the way of asking for help.
Humbled, Jodi told the SDN she doesn’t want to be a burden on others and avoids involving people.
Jodi said when Mitchell was home, he once made the trip from the diesel mechanic school in Lima to Sidney in 20 minutes, when she once fell in the yard with her cell phone on hand.
“The only thing he said was ‘I’m on my way’ and he was there in 20 minutes. Later, he carried me in his arms into Miami Valley Hospital (in Dayton) when I was having a problem. I have fallen in his presence and that really bothers him,”
The Kirtleys said Madalyn has also answered the call in many ways involving the kitchen, house cleaning, shopping with mom and much more.
Jodi said, “Maddie does most of the cooking. She has been a great blessing to this family. I tried to help make pizza the other night, but it ended up on the floor. She is always there for me.”
Jodi also explained that for some reason, the disease has not affected her ability to drive. However, she is unable to get her walker out of the vehicle without help from Madalyn and others.
“If people see us (others with MS) driving, just know we aren’t drunk. We have MS,” she said.
Research has determined that MS is not hereditary. Jodi’s father and a great-uncle has the disease, but she is glad her children are showing no current symptoms. Diagnosis usually occurs between ages 20 to 40.
Unable to work, care for family
Having worked in office management, customer service and tax preparation, Jodi has been unable to land employment. She has been turned down for Social Security disability, but is awaiting the results of the tenuous appeal process.
Jodi said the emotional impact of being unable to care for her family, dealing with MS and having no ability to provide income has taken its toll. She clings to the stem cell therapy has a light at the end of the tunnel.
Three clinics offer the treatment. The Kirtleys ruled out the California and Florida clinics due to the lengthy travel. The Chicago-based clinic would allow them to drive and be closer to home.
Family and friends are trying to raise funds for Kirtley, who faces a $16,000 cost just for the stem cell therapy session. Online fundraising efforts to cover the ongoing costs for all expenses continues.
A $2,000 deposit is required with the balance due upon completion.
Mitchell Kirtley contacted the SDN stating he had established a GoFundMe account to raise money for his mother’s treatment. His “military family,” as they are referred, have helped significantly.
The account can be found online at GoFundMe.com/4everstrong.
Through an email to the SDN, Mitchell spoke of his attempt to help his mom.
In part, he stated, “Once they (doctors) caught it, and she got on medication, the MS seemed to be held at bay. Fast forward to my eighth-grade year. The MS started taking a bigger effect on my mom. She started having issues where her legs got too weak to be able to get out of bed let alone walk. A steroid treatment would help for a while but the spells kept getting worse and more frequent.”
“Now, my mom can’t walk down the hallway without difficulties either holding on to the walls, furniture, my family, and I, and on days she isn’t too stubborn, her walker. Simple things like getting into our cars we take for granted she fights to do.”
He continued, “Deployed in Afghanistan, where I feel helpless to her. I get messages of her falling and sitting (there) for an hour or more until she gets the strength to get back up. I have been raised to always help people as a firefighter, I did that, and now as a combat medic, the call to help others is overwhelming at times. However, I feel helpless to my own mother, and it hurts.”
“I enlisted because I knew I would be able to help my family with money for bills. I knew I would have to face the hardships of leaving home, and not being able to physically help, and it hurts not being there. As a firefighter and soldier, I was trained to hide emotions. But I will admit that since being here I have cried more times than I care to count.”
“My mom has always said she will never let MS beat her, and it won’t. I will not let it, or let her give up.”
Mitchell and Jodi visit twice a day through Skype. Due to the time difference, Jodi sets her alarm for 8 a.m. each day to visit just before Mitchell retires for the evening. Around 10 p.m., they visit by computer before Mitchell begins his day.
No date has been announced for Mitchell’s return from deployment.
Ben Kirtley said Jodi’s motivation is to stand and greet her son in normal fashion. His motivation is quite different.
“If people saw her crying they would think differently about what she’s going through. Three or four times a week, I’ll walk in and she’ll be crying asking, ‘why her?’ and why does she have to be going through this. All she wants is to be the way she was before.”
The writer is a regular contributor to the Sidney Daily News.