Kaylee in infusion chair

Nov 05, 2019 / Rheumatology

Share Your Story: Courageous Kaylee

Meet Kaylee, a patient seen by our rheumatology experts. Learn more about her journey below.

Blog written by Kaylee's mom, Amberly of Forney, TX. 

Kaylee was diagnosed with eosinophilic fasciitis (EF) localized morphea this past fall. EF is a rare syndrome in which fascia, tissue under the skin and over the muscle, becomes swollen, inflamed and thick. The skin on the arms, legs, neck, abdomen or feet can swell quickly. EF may look similar to scleroderma but is not related.
 
Kaylee is an active 7-year-old who loves to play softball, volleyball, basketball and participates in cheerleading. One day this past fall, she told me that her feet were very itchy. It looked like really dry skin, so I went to the store to get a good lotion. I came home, only to find that her feet were rock hard – almost like a mannequin. I knew that something wasn’t right, so I took her to the doctor. Doctors all over the DFW metroplex were thrown off by Kaylee. Her labs would come back normal on paper, yet when they examined her, they could see and feel that there was something going on with her feet. Doctor after doctor would simply send us home with an I’m sorry. I knew that something was going on and I was not going to stop until I had an answer.
 
After seeing several doctors at different hospitals, I took her to a local dermatologist. This doctor was the first person that mentioned that Kaylee seemed to be experiencing a tissue problem, so she performed a small tissue biopsy on Kaylee’s foot to confirm. As soon as the results came back, the dermatologist worked with our pediatrician to help us get an appointment at Texas Scottish Rite Hospital for Children.  
 
From the moment we checked in for our first appointment with Dr. Stewart, Kaylee has felt special. All of the volunteers and staff are incredible. As soon as we met with Dr. Stewart, Kaylee’s father and I knew we were in the right place. We discussed how rare of a condition EF is and Dr. Stewart had a treatment plan that we were able to immediately start. 
 
The child life team at the hospital has been amazing. Already in our short time of being here, Morgan has made a huge impact on Kaylee. She will pop in to make sure everything is going smoothly and even chats with Kaylee to make sure she understands what is going on. We are incredibly grateful that the hospital has these special people.  
 
Whenever we visit the hospital, we make sure to stop for Kaylee’s most favorite treat – the popcorn! She thinks that it is just so cool that you can get such yummy popcorn when you come here for a visit.
 
Scottish Rite means so much to our family. We have a long journey ahead of us and I’m so grateful for doctors that know how to treat this rare disease. 

When nobody else knew what was going on, Scottish Rite gave us answers.

The amazing doctors give me hope that we are on the right path to getting Kaylee the best care and treatment.

DO YOU HAVE A STORY? WE WANT TO HEAR IT! SHARE YOUR STORY WITH US.

You May Also Like: