Nevus owners come in all shapes and sizes. The disease does not discriminate for race, religion or belief. Some cases are more severe than others but my experience thus far is that despite the subtype or severity, the owners and families of nevus owners alike, share the same levels of support for one another.
It gives me great pleasure to openly write about our journey and the journey of others on this platform to share not only our emotional struggles and human reaction to the disease; but to potentially offer knowledge to those seeking.
Today I am blessed to share a story about a little girl with ILVEN. Meet 9-year-old Rachael, a fan of literature – anything Bad Kitty by Nick Bruel is right up her alley. She has a healthy appetite and unlike myself, has blessed her family with not being picky!
Rachael was born with what her parents believed to be a suckling blister on the palm of her left hand and they thought it was adorable. However, by the time she was 6 months old it had spread halfway up her palm. The first dermatologist diagnosed Rachael with linear porokeratosis but he admitted he was way out of his league and sent them to a different dermatologist in Rochester, NY.
A punch bioosy was done and Rachael was diagnosed with epidermal nevus. The family was given a few prescriptions for creams but basically brushed off (ahhh… how I know the feeling).
At that time Rachael had growths on the bottoms of her feet that the same dermatologist insisted were warts. She attempted to freeze them off with liquid nitrogen but with no surprise to the family, failed.
Six months later they returned asking for more literature on Epidermal nevus but were given copies from a medical journal, that I’m sure many of us can confirm, means little to nothing without a medical degree.
Being that the family was military there same search and struggles for information continued with each move to a different state and new Dr.
Rachael struggled crawling because her ILVEN had spread at a rapid rate and would snag on the carpet as well as place pressure on her lesions. They were so thankful when she started to walk and passed that point of despair.
In 2011 the family was transferred to Virginia Beach and yet again, had to establish care with a new physician. At this point Mom, Lauren, was more Internet savvy and had determined on her own that what Rachael had was ILVEN. Mom printed everything she had found and presented to Portsmouth Naval Hospital with her findings.
Their new dermatologist was riveted by Rachel, completely and utterly charmed by this blue-eyed blondie. Unlike the past the Dr. Listened to everything Mom had to say and ordered a second biopsy. The results? ILVEN. it was such a relief to have a diagnosis and course of treatment began to change.
After being diagnosed Mom felt the struggle and knew she needed support. Thats when she decided to start a Facebook support group, which is where I came to know this angel.
Rachael’s ILVEN continued to grow. In February 2015 she had her first surgery to remove the ILVEN from her hand, knee, toe, finger, wrist and bottom of her foot.
In July 2015 she had a second surgery to correct a keloid scar ; an overgrowth of granulation tissue at the site of a skin injury, on her left hand. She had a pin placed in her hand/finger to keep it in place.
Rachael is a fighter. She has never been ashamed or embarrassed of her ILVEN. She explains it to people who ask or stare in her own child like innocence and even keeps a stock of band aids on hand for when her ILVEN cracks or bleeds.
Rachael, you are an inspiration. I yearn to teach my Mermaid to go through life with your candidacy and courage in the face of adversity.
My very first post spoke about staying up at night searching for a family like mine, someone to understand, that was the birth place of Mommy’s Mermaid. I later found the support group Lauren had created and will forever be grateful. We are 7 years behind their struggle but thanks to Lauren’s diligence and command, we are making headway.
Our families share a bond unlike others. Lauren and I share that need to find a sense of belonging and teach others through our own experiences. We sincerely hope that through the ILVEN support group and Mommy’s Mermaid we can be a place for others to find companionship and strength.
Thanks for walking with us today,
Rachael, Lauren, Mermaid