Ethan is full of life. He is unconditionally happy, wicked smart and has never met a stranger.
When we noticed a small white spot under his eye in the fall of 2020, we did not give it a second thought. Perhaps it is a birthmark? Or a skin discoloration? But as time passed, Ethan started to receive more attention regarding the spot.
Once Brett and I realized the spot was not going away, we scheduled an appointment at Nationwide Children’s Hospital (NCH) with Dr. Fernandez. Ethan was immediately diagnosed with Pediatric Scleroderma or commonly referred to as morphea in children with a localized area like Ethan’s situation. It is considered an autoimmune disease and could potentially affect his muscles and bones. With this particular diagnosis, a major problem can be growth defects and deformities.
Immediately, thoughts started to race in our minds. How will this affect Ethan as he gets older? Will he be bullied at school for looking different? What are the next steps?
Brett and I quickly started to research the diagnosis in more detail and agreed that we needed to see a Pediatric Rheumatologist to get all our questions answered.
From there we saw ophthalmology, had blood work, an MRI and additional appointments with some of the nation’s leading experts in this field. While we do not have all of the answers, we are on a path to get them.
The hardest question is from Ethan, “Mommy, why doesn’t anyone else have this spot under their eye? Why am I the only one?” We tell Ethan he is special, brave and different. One day he will understand and one day I hope we can get more answers on WHY this has happened.
We do not know if the suggested therapy of immunosuppressant drugs will be in his future or how that will affect Ethan, but we do know that rare diseases such as Pediatric Scleroderma are not fully understood.
I am running the NCH Half Marathon to support in the search for answers. Not just for Ethan but for all children with rare rheumatologic diseases! I am running to give Ethan confidence in his condition, and I am running to show Ethan that we can do anything!
Please consider supporting me as I run the NHC Half Marathon….because we all know that Ethan is SklAWESOME!