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Inability to Eat Enhances Macomb Girl’s Taste for Life

Four-year-old Kaitlyn Garon has a rare and severe food allergy that requires her to be fed through a tube in her stomach. Her day-to-day life isn't easy, but you'd never know it by looking at her smile.

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.

Kim Vaughn April 13, 2012 at 12:56 PM
Thank you for this article on my sweet niece! She is so blessed to have loving parents giving her the best care, and a "normal" childhood...even without food. Her big sister looks out for her and they just enjoy the fun of being kids! It's not easy for any of them, but they are surrounded by lots of love and support. I love them all! :)
Karla Patterson April 13, 2012 at 04:55 PM
Thanks for the great article! As a family we do all we can to make life "normal" for our sweet granddaughter! She can do everything any other 4 year old can do - except eat! Praying for a CURE!! Anyone want to join us on May 19 for the bowling fundraiser or if you would like to donate an item to the raffle/auction - please contact us at patterson01@comcast.net
Peggy Kaltenbach Zinser April 13, 2012 at 09:23 PM
Thanks for doing this article!! My daughter also has eosinophilic esophagitis. Thanks for sharing your story to help spread awareness!! Kayla (my daughter) and I will see you at the bowling fundraiser!!
Katie Dougherty April 16, 2012 at 04:41 PM
That is a really nice article. My 10 year old daughter also has EoE. She was diagnosed at age 5. We had to put her on neocate too. Over the last 5 years, we have found 13 safe foods. This is a hard disease, but things could be worse. My daughter is one of the strongest people I know. I love the saying, "the best treat we can give them is a cure!"
Shay Kyle April 17, 2012 at 11:34 AM
Thank You Garon's for sharing Kaitlyn's Story, and was a terriffic story it is! Macomb Patch thank you for taking the time to publish an article on eosinophilic disorders, Michigan needs awareness on this disease and you helping this family reach out to the community is GREAT! Currently Many Michigan Families are gathering to raise funds for medical research thru CURED. We are so proud to have Kaitlyn and her entire family as a part of our mission.
Shay Kyle April 17, 2012 at 11:35 AM
Katie, I am sorry that your daughter also has eos, we have a great support group and we would love to have you and welcome to our group. Feel Free to Contact me at Shaykyle528@yahoo.com I have two boys 10&5 with Eos.

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