SPARTA, MI -- 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 every night 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.
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.
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.