SPARTA - Lyndi Hollinger remains hopeful that she'll get a very special birthday present this year.
The daughter of State Young Farmer Committee member Gy Hollinger turns 9 on Sept. 29, but she is hooked up to a kidney dialysis machine next to her bed for 10 hours every night while she awaits an organ transplant that's needed to save her life.
Lyndi, oldest of three sisters, is suffering from a rare disease, Focal Segmental Glomerulosclerosis (FSGS), forcing the removal of both of her kidneys on March 19, 2015 at DeVos Children's Hospital in Grand Rapids. She has undergone dialysis for the past two years and must continue to undergo daily dialysis until a matching kidney donor can be found.
"It's not easy to care for a sick child," said Tressa Hollinger, Lyndi's mom, who prays that a kidney transplant will allow her daughter to lead a more normal life. "You can't prepare for it. Ever since she has been on dialysis, she has been a completely different child. It's made such a difference. She was so sick before and the steroids she had to take made her swell up."
Lyndi was diagnosed with the disease three weeks before her 2nd birthday. FSGS attacks the kidneys' filtering glomuli and is the leading cause of Nephrotic Syndrome in adults and adolescents.
Since the removal of her kidneys, which Gy, 34, and Tressa, 35, explained had become "toxic" to their daughter's body, Lyndi has been able to function much better. She goes to Trinity Lutheran School in Conklin, where Tressa serves as the office manager. She enjoys baking with both of her grandmothers and riding bikes with her sisters, Joslin, 5, and Kayla, 3, but Lyndi also tires easily.
At night, she must be undergo dialysis and have a feeding tube hooked up to her body to feed it important nutrients in liquid form. She is unable to consume many of her favorite foods—such as milk, French fries and almonds-because her body can't tolerate them.
There is constant family support for Lyndi Hollinger, center, from, left to right, mom Tressa, sister Kayla, dad Gy and sister Joslin.
The third grader with Auburn hair streaked full of natural highlights and freckles enjoys simple pleasures such as puppies, butterflies, helping tend livestock animals on her grandparents' farm, playing with friends and swimming, although not in a lake due to the risk of infection.
She is restricted to one liter of fluid intake per day and undergoes a mid-afternoon dialysis flush between 3 p.m. and 5 p.m. to keep her body functioning as normally as possible. She also must have her blood pressure, weight and other vital signs monitored carefully to determine the proper formula to put fluid into her body through the dialysis machine and to keep her in optimal health for a transplant.
"It's not her fault," Tressa said of the constant care and strict rules Lyndi must follow. "She didn't ask for this."
Lyndi, who dreams of a possible career in culinary arts, spends time baking something almost every day, but is prevented from tasting many of those treats. Instead, she said she eats lots of carrots and noodles-foods her body seems to tolerate.
Lyndi Hoillinger, left, and father Gy Hollinger remain optimistic about finding a kidney donor.
Everything else tastes sort of "blah," she added, because of the medication and treatments which have supressed her taste buds.
"It's been a long journey for me," Lyndi said.
In many ways, the journey is just beginning for her. Her O blood type has made it difficult to find a match. Lyndi has been on the kidney transplant list since February, and the Hollingers weren't able to find a match from her extended family.
There were high hopes when Tressa's brother Daryl Scheidel seemed like he might be a suitable cross match. He underwent six different tests and had volunteered to donate one of his kidneys to his niece, but, after passing the first three tests, the next three came back negative. Tressa explained a potential donor must pass at least four of the six tests to be considered.
"He wanted to help. From the day she was diagnosed, he wanted to be a donor," Tressa said of Lyndi's uncle. "It hit all of us so hard. We spent a couple of days crying."
Once she gets a transplant, it's just the beginning of what promises to be a lifelong journey.
"Just because she gets a kidney transplant, it doesn't mean the disease can't come back," Tressa said. "She's just waiting for a kidney first and then we'll go from there."
Gy, who handles fertilizer sales and chemical applications for Wilber Ellis Co., said he's thankful for the determination that Lyndi has exhibited and the unconditional love and support of everyone in his family while she awaits a life-saving transplant.
"We have very strong family support," Gy said. "Faith in God has been incredibly strong. It's been tested, but it's been strong."
"Awesome" is how Tressa describes Lyndi's attitude about her situation.
"I think it also helps that she has such a strong faith. I think this has changed her in that she sees the good in people because of the people she has met (in the hospital)," Tressa said of Lyndi and the entire Hollinger family bonding with other families going through a similar ordeal. "We have had a lot of sleepovers in the hospital and the girls have loved it."
The Hollinger sisters, left to right, Lyndi, 8, Kayla, 3, and Joslin, 5, show their unity with Team Lyndi T-shirts.
Lyndi, however, would prefer a kidney transplant for her ninth birthday, just to help her feel like a normal child again.
"I'm ready," she said with a smile.
"Yeah, I think she's ready," Gy said of anticipating a call from the hospital to prepare for an immediate transplant surgery. "Overall, I think my oldest daughter has had a great attitude about it. She's ready to start living a normal life."
The Hollinger family, which proudly wears Team Lyndi T-shirts, is hosting its fifth annual fund raiser for NephCure research to benefit FSGS and Nephrotic Syndrome (NS). The charity walk is scheduled for Oct. 2 at Millennium Park in Grand Rapids.
So far, previous events have raised more than $20,000 for FSGS and NS research.
To learn more, please visit the Lyndi's New Kidney Journey Facebook page, where you'll find information about the fund raiser, see photos of Lyndi and learn how to become a kidney donor.