Editor's note: This story was originally posted on Macomb Patch on April 13. On April 16, it was chosen for Huffington Post's "Greatest Person of the Day" feature. We hope Kaitlyn's story spreads awareness and understanding of this rare condition and that her smile inspires those efforts to find a cure.
It’s been said that the loss of one sense can strengthen another. When 4-year-old Kaitlyn Garon lost the ability to eat, it was her smile that got stronger.
Diagnosed with a rare and severe food allergy at age 1, the Macomb Township girl has spent the last three years learning to adapt to life with Eosinophilic Esophagitis, an inflammatory condition in which large numbers of white blood cells fill the wall of the esophagus and attack wherever food proteins have touched.
Because of her condition, Kaitlyn is unable to eat anything by mouth except water, sugar cubes and red Kool-Aid. Her nutrients and energy–often demonstrated by a well-practiced leap into her father’s arms–are fueled solely by a formula fed through a tube while she sleeps.
While it’s not ideal, and there is hope that it may not be lifelong, Kaitlyn’s mother Michelle Garon considers it just one more adjustment to her family’s “new normal.”
“We stress positivity and strength as much as we can,” she said. “Kaitlyn walks and talks like other kids, she just can’t eat like them. It makes life difficult, because everything is so food focused, but there are worse things a person can have.”
Since her initial diagnosis, Kaitlyn has undergone a series of endoscopies and surgeries, the latest of which saw the implant of her MIC-KEY button, a smaller feeding tube better suited to the 4-year-old’s love of dancing.
“She’s a total trooper,” Michelle said of her daughter's attitude during medical procedures. “She is such an inspiration because of how she carries herself, and how well she handles the challenges ahead of her. When she’s in pain, it’s chronic pain, but you rarely find her without a smile on her face."
Adapting to a 'new normal'
Michelle is equally proud of her older daughter, Sydney, who has had to make sacrifices of her own for her little sister's benefit.
“We don’t eat dinner as a family anymore, but try to split our timing up, so the three of us aren’t eating in front of Kaitlyn and she can’t have anything,” Michelle said. “Sydney can’t pop popcorn at home because the smell drives Kaitlyn nuts. She does wish for a normal family life, but she is very concerned about her sister.”
Although Kaitlyn is now growing by leaps and bounds, this was not always the case.
“From the time she was around 2 until just past 3, she completely stopped growing, which is really weird for a 3-year-old kid,” Michelle said. “We knew there were major problems. Physically, she looked so sick.”
Unable to eat, Kaitlyn was drinking to feel full. It became clear that she would need a feeding tube and a double dose of steroids to try and kill the increasingly high levels of white blood cells in her esophagus.
Now four shoe sizes and nine pounds later, she is still on a feeding tube and steroids, but “people never know she was that sick,” Michelle says. “Her strength and determination to live as normal a life as possible is just amazing.”
Although only 4, Kaitlyn understands her condition and knows her limits. She can pass out cupcakes to friends with a smile and say Eosinophilic Esophagitis without a hiccup.
But for the future, her family can only hope the severity of her condition lessens over time or a cure is found. In the meantime, Michelle takes inspiration from her daughter's ever-present smile and asks others to use Kaitlyn's story to develop a greater understanding of this largely unknown disease.
"Understand my daughter can’t eat anything. Understand where we’re coming from. The No. 1 thing is inclusion. You may want to have cupcakes at some event, but if you can avoid doing that and include everyone, it means so much. Most kids can go have a cupcake any other time, my child never can."
"We are blessed to have insurance cover most of her (medical costs). A lot of families aren’t that fortunate. For us to go somewhere, we have to pack everything (e.g. medical equipment, formula, documentation). There are no conveniences with this disease."
How You Can Help
On May 19, at Thunderbird Lanes in Troy, the CURED Foundation will host a fund-raiser for medical research on Eosinophilic Disorders. Registration starts at 5 p.m. and bowling at 5:30 p.m.
CURED strives to create awareness, educate and most of all raise funds for medical research. The foundation donates 100 percent of its profits to research for better treatments and a cure for all those affected by Eosinophilic Disorders.
This event is being held during National Eosinophilic Awareness Week.