PLAINFIELD — Kendall Quinn Atkinson is a spunky 4-year-old who loves Mickey Mouse, Cinderella, whipped cream and playing with her sisters.
She also happens to have a mitochondrial disease.
Kendall was born full-term with unexpected breathing and feeding problems that led to a two-week neonatal intensive care unit stay that left her doctors shrugging their shoulders and shaking their heads.
Doctors told Kendall’s worried parents Terra and Ben, “Hopefully her body just wakes up one day and starts doing everything it should.”
Unfortunately it didn’t work out like that.
At 12 weeks old, Kendall became septic from a respiratory synclinal virus and a bad urinary tract infection and was hospitalized for another few weeks while a whole new team of doctors tried again to figure her out.
While they were still left scratching their heads, the doctors at least helped them make progress.
Kendall had a g-tube (a feeding tube that goes directly into her stomach) placed when she was 7 months old through which she could get her special formula that was already broken down to help her body try to absorb all the nutrients.
She continued to need hospitalizations for aspiration pneumonia throughout her first year of life.
When she was 9 months old, Kendall was referred to Children’s Hospital of Wisconsin, where a group of doctors, including geneticists, started trying to piece the puzzle of Kendall together.
Years of tests and lots of waiting led to a diagnosis of mitochondrial myopathy – a disease of energy metabolism.
“Mitochondria are the power plants of every cell in our bodies and, when the process by which they create energy is disrupted due to Mito disease, not enough energy is produced by the body to maintain normal function,” Terra explained. “When enough cells start to malfunction, it can lead to organ failure.”
Terra said there is currently no cure for mitochondrial disease, but advances are being made every day by scientists. At best, supportive care to slow down the progression of disease in various organ systems is offered.
Kendall has suffered since birth with a GI tract that does not function properly, has chronic lung disease due to near constant aspiration of her food into her lungs as an infant, has endured countless hours of therapies to keep her muscles functional, has lost most of her bladder function, and has struggles with her immune system and bone marrow functioning.
Besides the permanent IV (Broviac) line in her chest, she has a gastro-jejunal (G-J) tube that delivers small amounts of formula and medicines into her small intestine, and an indwelling foley catheter through a surgically created hole in her abdomen through which urine can drain.
Terra said Kendall has faced every challenge life has thrown her way with a smile on her face and a determined attitude to not let anything keep her down.
“As she has lost normal functioning of her stomach and intestines, and become dependent on a permanent IV placed in her chest, she never complains about the nausea, pain, or sheer frustration of being attached to various tubes and wires and pumps,” Terra said.
Kendall carries her IV pumps and heavy bags of IV fluids in her backpack, and tries to keep up with her three older sisters, Kealey, 11; Karissa, 8; and Kaylen, 5.
Not only is Kendall’s day-to-day care expensive in spite of insurance, but the trips required back and forth to Milwaukee for her continued care add up.
Add in the extreme costs incurred while a child with Kendall’s needs is hospitalized, and multiply that by four years, and you will have some idea of what Kendall’s family is up against.
A fund set up in Kendall’s name is at BMO Harris -- the Kendall Quinn Medical Fund. Checks can be made out to the fund, which is used by the family to pay any medical-related costs for Kendall and her care.
Donations can also be made online via Pay Pal to email@example.com.
Read more about Kendall’s story at her mom’s blog http://terratalking.com/Kendalls-story, and follow along on Kendall’s support page on Facebook at www.facebook.com/HopeForKendall.
A fundraiser, “Hope for Kendall Cinderella Fundraiser,” with 100 percent of the monies raised going to help with Kendall’s medical expenses, is 6 to 9 p.m., Saturday, June 29, at Pioneer Bowling Lanes, 15610 S. Joliet Road, Plainfield.
Tickets are $25 for adults and $20 for children up to 10 years of age. Ticket price includes bowling, shoes, pizza and pop. There will also be 50/50 raffles and silent auctions.
Organizers of the event are still seeking lane sponsors, vendors, raffle items, gas cards, various gift cards and donations.
For more information or to donate call Chris at (815) 210-5024.