An Unstoppable Spirit

By Patricia S.*

With sincere appreciation for all that you do...here is my story.

Evan* is my beautiful grandson.  He is very important and special to me, as are all 7 of our grandchildren.  But Evan, is just a little bit extra special because he has epidermolytic ichthyosis (formerly called EHK).  While we were washing our hands together, I said to Evan, “Evan, Mimi is so sorry that you have EI.  I wish I could make it go away.  His reply to me was, “It’s okay, Mimi, I am used to it.  But, I wish I didn’t have it.” All the children and families with loved ones that have a form of ichthyosis are hoping to find a cure.  Just wishing won’t make it go away.  FIRST needs money for research to help find a cure. 

Evan just celebrated his Holy Sacraments in May.  How handsome he looked in his first real shirt and tie and even a suit jacket.  Unfortunately, crocs were still the order of the day for his shoes, since his feet are very swollen and sensitive.

Evan will be 8 years old soon.  I still remember that phone call from our daughter, Kim, Evan’s mom.  She called from the hospital and tearfully said, “Mom, something is wrong with Evan’s skin. They have sent him to Boston Children’s Hospital.”  We drove down and anxiously awaited the results of blood work that would confirm Evan’s diagnosis.  As he lay in the neonatal unit, he looked so fragile...wrapped in gauze from head to toe.  But despite all odds, his powerful spirit emanated from the bassinette.  I could literally feel the strength and beauty of that spirit. It was almost tangible to me.  I knew he would be okay.

And he is.

He is a fabulous, bright, outgoing young boy of 7+ years who has taught me the meaning of acceptance and perseverance - as well as how to use my iPad and a few other remarkable things.  His laugh is contagious and I will do just about anything to get one going.

Evan and I have spent a lot of quality time together these past seven years.  I am in awe of his mother and father, Kim and Mark, and his sister and brother, Sophia and Harrison.  They take each day as it comes, one day at a time, and never feel sorry for themselves or Evan.  They are his role models of love, patience, kindness and understanding.

I have been doing Evan’s laundry since he was born.  Children with ichthyosis need lots of soaking baths and moisturizers. The people at Aquaphor have been most generous to families with children with ichthyosis.  Unfortunately, their clothes become heavy with all the ointments and creams.  The laundry basket has grown from onesies and diapers to bathing suits and athletic wear.  I find a cup of pure ammonia added to the load helps to dissolve most of the grease. I wash his clothes twice with the ammonia and All Free and Clear detergent on the hottest setting.  I use white vinegar as my fabric softener.   It is one small gesture of kindness that I can do to help with Evan’s on going treatment plan.  It makes me feel close to him all day.

Two years ago Evan drew a picture which I had made into a poster, it is called SMILE...FIRST with a big happy red crayon portrait.

Anything I can do from my little corner of the world, I will do to help FIRST.

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Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officals endorse any treatments listed here.  All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.

*Patti passed away in 2021
*Evan passed away from leukemia in 2022