Story and photo by Haley Perkins / Contributing Writer
In Kathy Holden’s living room are two doors, one on each side of her fireplace. The door on the right leads to her backyard, but the door on the left leads to Kathy’s sewing room.
The sewing room is where Holden spends much of her free time these days, rather than enjoying an afternoon in her backyard. In the room are metal shelves filled with multiple yards of fabrics in different colors, patterns and types. On the wall to the right sits her monograming machine with different colors and types of thread. In the middle sits a wooden desk with patterns and fabric scattered all around with a spot cleared for her sewing machine.
This is where she sits for hours on end, listening to music and sewing the day away.
Holden, 62, is using her sewing skills to create masks for the ALS Foundation which is going to sell them to raise money for research.
For Holden, the job is more than just making masks; it is far more personal.
Holden’s sister Carrie Jones, 59, was diagnosed with amyotrophic lateral sclerosis or ALS in January of 2018. Jones first went to Vanderbilt University Medical Center after she lost her voice. There she was diagnosed and a second opinion from Emory Hospital in Atlanta confirmed it.
“Just pure shock, just overwhelmed with sadness and totally not knowing all that was involved,” Holden said as she recounted her thoughts when her sister told her about her diagnosis.
“It’s just devastating.”
Holden was born in Atlanta, and except for a short time when the family lived in Florida, she has lived in Murfreesboro. Holden is the middle child between her older brother, Jimmy, and her younger sister, Carrie. When they were growing up, Holden and her sister were not very close, but they grew closer as adults.
When her sister was diagnosed, Holden admitted she did not know much about the disease. To combat lack of knowledge, she attended a meeting for those who had the disease and their families.
“Of course, it was a tearjerker,” Holden said. Unfortunately, there is no cure for ALS, although research has made progress.
Since her sister was diagnosed, Carrie has completely lost her voice and now she uses an app on her iPad or phone to speak for her. About a year ago she was put on a feeding tube because she can no longer eat solids. “Now it is more in her fingers and her right legs that she is dragging some,” Holden said describing how the disease has affected her sister.
Like anyone, Jones has good days and bad days. Her bad days are where she has trouble swallowing. “She has really bad coughing spells that will keep her up all night, and it just wears her out. She’s totally exhausted from trying to rest but can’t.”
Each year, 20,000 cases are diagnosed in the United States, according to the Mayo Clinic. With the disease being rare it means that research for a cure does not receive as much funding and attention as compared to other diseases. In 2014, the ALS Ice Bucket challenge raised millions to bring attention to the disease research, but now the ALS foundation is using masks to help receive money to help find a cure.
Holden, who has been sewing for years, is donating her time and resources to help make masks for the foundation to sell. For her, volunteering her time to make masks is the least she can do, by helping she is supporting her sister and the foundation.
The New England Journal of Medicine recently issued a report on two drugs that reduces the loss of activity between the brain and nerves that control movements in limbs. Though this is a small promise on the road to find a cure, Holden knows that it unfortunately will not give her more time with her sister who is Stage 4.
“She’s never a prime candidate for any of the medicine. I sure hope they develop it for…anyone else.”
When Holden is not making masks, she is going back and forth between her two jobs. She works at Angles Crossing, a massage care center, where she schedules appointments, cleans out rooms and anything else that is needed. In addition, she is an assistant director at Murfreesboro City Schools Extended School Program. As an assistant she deals with parents, children and the college staff. She also helps run the day to day operations to help the program run. She also finds time to sew and monogram items for people.
Holden wears many hats and does many different jobs. Despite being busy she still has found time to help make masks for the ALS Foundation in order to help support her sister. For her, making the masks is personal and is so much more than a fourteen by nine piece of fabric pleated and sewed with a six inch piece of elastic on each side. It is support for her sister and so many like her.
The ALS organization began selling the masks on Oct. 3 and will sell them through the new year.
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