Christmas morning, 2004, Jayani Asha Seth was born to Dr. Ajay Seth and his wife, Kimberly.
Jayani was absolutely beautiful and was known for her eyes.
“She had the most beautiful eyes with the longest lashes,” Kim said.
The Jackson Township family was on a trip to Florida when their five-month-old daughter started to vomit. They caught an emergency flight home and Jayani was admitted to the hospital with what turned out to be a brain tumor.
They removed the tumor and successfully stopped the pressure to her brain, but because of her age, she was ineligible for radiation therapy.
The small, determined infant underwent multiple surgeries, many rounds of chemotherapy, and trips to St. Jude Hospital, in Memphis, Tennessee, before she finally passed away at 17-months.
“The tumor won,” Kim lamented. “It grew faster than it could be controlled.”
The family experienced how difficult it was to be a family devastated with cancer--a child with cancer.
Jayani’s Army was developed within a year after her death. They help any
family, whose child has cancer in Stark County.
“We wanted to give back to the very community that gave to us,” Kim explained.
Right now they have enlisted families in Canton, Canal Fulton, Louisville, Alliance and Perry.
“It is so overwhelming when a family has a diagnosis of cancer,” she explained.
Family and friends step up to the plate.
“Everyone is there for a couple months, but they go back to their own lives. We are an organization that is a constant in their life.”
Transportation, meals and lodging were provided for them when they went through their experience. When one child and parent is at the hospital and the other is trying to run a household, it can get difficult. “We treasured the support we received.”
Jayani’s Army offers meals, gas cards, babysitting, tutoring for kids who are missing school, sibling support, and they even mow lawns.
“There is a common thread with a devastating diagnosis of cancer and in losing a child, no matter how old they are,” Kim said. “We understand.”
Their logo is a butterfly.
“We chose that because it represents rebirth and renewal. The spring was when she was diagnosed and when she passed away. We wanted it to represent a rebirth,” Kim said.
The organization went form an idea to a seven-member executive board and over 100 volunteers in a very short time. She passed away the Tuesday after Memorial Day, 2006. The first Family Memorial Walk was Memorial Day weekend, 2007.
Jayani’s mom explains why their yearly fundraiser is a walk.
“The tumor had gone from her brain to her spine and paralyzed her. I had to carry her everywhere at the end. The weekend before she passed away, she wanted to be outside constantly, so that was what we did. We just walked and walked.”
Last year, 450 walkers participated, logging 1,675 miles around the track at GlenOak Stadium.
“We almost made it to Denver, Colorado,” Kim laughed.
Jayani was determined. “After every surgery, she had an injury to a nerve or she was partially paralyzed, but she regained full strength and full function, after every one of those injuries,” her mom proudly stated. “When Jayani was 13-months-old, she stood up in our back yard, took a few steps, and sat back down. She had a surgery the next week and lost that, but she regained her strength and took a few steps a few weeks later.”
The family paid attention to the miracles.
“We didn’t get the miracle of cure, but there were every day miracles that we appreciate and we were very proud of her.”
Jayani’s family focused on what was important during her time here.
“Unfortunately, we had her shorter than expected. The end came very quickly. She died at home with us because we were in a hospice program,” said Kim. “We were very thankful that she was with us in the end. We didn’t focus on how long she had. We wanted to keep her as happy as possible. We focused on the quality of her life.”
Another division of the army, called Jaideep’s Buddies, helps the siblings of those with cancer.
Jaideep is now seven, but he was three when his sister, Jayani, died. “They are affected, also,” Kimberly stated. “We are there to support the entire family. The child with cancer is having so much attention and many times the other siblings may feel left out. We recognize them and let them know they are important.”
“Nothing helps with the grief of losing our child; it reopens some scars sometimes, but it really helps to lend out a hand,” Kim stated, “When we are able to give gas money, make meals, or visit, it really does mean a lot to them and to me.”
On May 23, from 10 a.m.-8 p.m., Jayani’s family and her army will be walking around the Glenoak Track, on Schneider N.E. They are non-profit and all donations are accepted on site. Families and groups are encouraged to walk. Toy donations are also accepted for kids battling cancer.
If you would like to help Jayani’s Army or be a part of their walk, you can go to www.Jayanisarmy.org. E-mail is Jayanisarmy @gmail.com.
