Finally, in 2011 after a punch biopsy, she received a concrete diagnosis of an incurable rare skin disease called inflammatory linear verrucous epidermal nevus, or ILVEN. (ILVEN is the result of a sporadic cell mutation that occurs in the womb while skin is forming.) By this time, she had ILVEN all over her body, to include her groin area and the bottoms of her feet. Her hands are by far the worst. It's gotten to the point where she is struggling with her schoolwork. She is right-handed, and that's where the worst ILVEN is. Even holding a pencil is difficult for her. While the plaques are relatively thin in width, they are hard and susceptible to cracking and bleeding. Sometimes the patch on her left thigh flares up so bad that it's painful to the touch. Sometimes if she plays too rough, one of the thicker plaques might catch on something and rip. She is never without a back-up stash of bandaids.
The most frustrating part of this disease is finding a doctor who knows what he or she is dealing with. But we've struck gold. I started a support group last year, and was referred to a pediatric plastic surgeon by one of our members.
We had her consultation today (11/23/14) with Dr. Bruce Bauer of NorthShore, and he explained the procedure in depth. There will be a minimum of two surgeries. The intent for the first surgery is to remove all the ILVEN on her right hand by fully excising them and stitching the healthy skin back together, although there are some spots on her inner fingers that will require a full thickness skin graft, so he will be taking skin from her groin area. He will also remove the plaques from her knees, her ankle, her toe, and possibly the spot on the bottom of her right foot. Her left hand will be a separate surgery because of the healing process. She will be in full bandages for a minimum of a week, and he wants to be sure that she has at least one hand that she can use.
I was prepared for the explanation of the procedure and the healing process. What I was not prepared for was the length of time we will have to spend in Chicago both pre- and post-op. We will be required to stay in the Chicago area for at least 7 days, but could be as many as two weeks. I haven't even begun to calculate the expenses, but between the traveling and lodging, I know it will add up quickly. We have already begun saving as of today.
I am anxious for my little girl to begin living her life without this disease interfering in the little things, like monkeybars, or holding hands with her friend. She is why I'm turning to gofundme. It's my hope that by reaching out and asking for help, she might be that much closer to living a life that does not include ILVEN.
Thank you for taking the time to read her story.
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