Kylee is seven years old with a twin brother, Tyler. They were born full-term on April 7, 2005.
After a normal pregnancy, and our attempt to use breast milk did not work out, it wasn’t about a
few months after starting formula that we knew that we needed to make a change. Since at this
time, Kylee’s brother was colic he was switched to Enfamil Nutramagin immediately and within
a few weeks was a new baby. Kylee did not seem to have the “colic” symptoms but she did have
symptoms that seemed to not settle with her, so the pediatrician suggested switching to Enfamil
ProSobee to ease her.
All seemed well up until Kylee was 15 months old. She had an anaphalactic reaction to peanut butter,
to this day I feel that she knew something was wrong and would not eat her lunch but only to have
this reaction on her face by rubbing her eye. Later at 2 years old, she also had a reaction with
swelled lips from eating eggs.
The complexity of Kylee’s allergies weren’t realized until she was 3-1/2 years old, when she began
to complain of extreme stomachaches. As a few months of this went by, we decided to take her to a
gastroenterologist. I had a “feeling” that something else must be going on given the known allergies
that she already had. Within one visit of explanation of Kylee’s symptoms, it was suggested that
she may have a rare and little known Eosinophilic Disorder. After tests and including an endoscopy,
she was diagnosed with Eosinophilic Esophagitis.
She was required to eliminate the top 8 food groups; peanuts, tree nuts, fish, shellfish, milk, soy,
wheat and eggs from her diet. After 1-1/2 years of testing and re-testing, it was suggested that
we continue her treatment at Cincinnati Children’s where we start over with her elimination. After
3 years many endoscopies later, it was a pass or fail and we would have to make the choice of a full
elemental diet that would require drinking an amino acid based supplemental formula and/or use
steriods, and then the test came back and it was her first pass eliminating top 8 since early in her
diagnosis. At this point, she only had 1 food group left to trial which was milk. We decided to trial
milk last because even after switching formulas as a baby, as she grew older she never “liked” milk
and preferred soy. It turns out that soy is her main culprit in EoE and milk was her only pass.
After going through all of this, Kylee has always remained a very happy and loving daughter. Even
when she does not feel the greatest, she still gets up and wants to go to school. She is most
passionate about dancing, enjoys softball, swimming, drawing, and spending time with her family and
I am so thankful for my daughter and the difference that she has made in my life, she is the
strongest person I know. With that said, during our journey it wasn’t until we found CURED, that
really made a difference in our lives and our outlook with this horrible disease. No matter what
the severity level that one suffers, it affects your life which makes me feel more compelled to tell
Kylee’s story by spreading awareness with CURED in hopes that one day there will be a Cure.