EB is a horrible disease, a disfiguring disease that kids are born with and it’s unrelenting suffering from the beginning til the end. It’s lifing in bandages, living on morphine drip. It’s horrendous.
When I first heard about EB, it was quite hard to grasp the intensity of the condition. It’s about the most insane skin disorder you can imagine. And when you realise it also affects the internal organs, then you see it as diabolical.
“Children with EB are called “Butterfly Children” because EB is described as a skin condition in which the skin is so fragile, it is like butterfly wings.”
Like any mother, Silvia never imagined she would have to to bury her first son, Alex, who was stillborn at full term. After a miscarriage she had Nicky, who was diagnosed at birth with the Recessive Dystrophic form of Epidermolysis Bullosa, an incurabile, rare and always-fatal skin disorder. EB is considered an Ultra-Orphan Disease, and at the time of Nicky’s birth there was no research for a cure. In the months and years that passed she had to learn to enjoy each moment, find happiness in the midst of sorrow and try everything she could to keep him alive, often with very few resources, little to no help and even less information available. Burying another child was just not going to happen if she could possibly prevent it.
Butterfly Child is the story of a mother’s journey through grief and incredible challenges. From Insurance Companies refusal to cover the most basic needs for any EB patient to Silvia’s trying to make sense of her situation, from a divorce to a remarriage and another scary pregnancy. Her youngest son, Connor, is 100% healthy and she never, ever, takes it for granted.
Mom to 3 boys, 1 in heaven, 2 on earth. My first son Alex (whose demise is most likely EB related) was stillborn at full term. After a miscarriage, I had my second son Nicky, who has the Recessive Dystrophic form of Epidermolysis Bullosa. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted. I am an author, photographer, graphic artist, webmaster, blogger and more.
When you know more than the real doctors do about your child.
When you consider internet friends you’ve never met to be some of your best friends.
When you think it’s a good day if you don’t see any blood.
When you get asked at least once a week if you are a nurse.
When your two-year-old knows how to pop blisters.
When you pack for a vacation and the first suit case is filled with supplies and equipment.
When you have a legitimate pharmacy in your kitchen and the pharmacist knows your name and welcomes you as if it was Cheers (Norm!).
When you constantly get asked “How do you do it?”, and you have no clue either.
When your neighbors must think you have an online shopping problem from all the boxes of supplies dropped by your door.
When you have your insurance ID number memorized.
When the secretary, principal and superintendent of your child’s school know you by name.
When you find little pieces of Mepitel laying around the house everywhere.
When you developed some serious muscles lifting the wheelchair in and out of the trunk.
When you realize you could get a job writing appeals letters to the insurance.
When your capacity for hope is bigger than anyone else’s, that you know of.
When you can hear your child calling you across the house, with dad snoring next to you.
When you make sure your purse has some extra gauze, scissors & syringes.
When your child’s doctors take orders from you.
When you consider a good day one that your child does not ask for pain meds.
When the school nurse for your other (healthy) children know who you are.
When you have to stop and explain the Medical Terminology you don’t realize you say to people that are unfamiliar with your child’s condition.
When you have more medical supplies than a third world country.
When you have lost count of the number of hospital stays, surgeries and procedures that your child has had and you don’t really care to know.
When every night you sincerely thank Heaven for allowing you to mother this child for one more day. You know the time will come when it will be over, and you don’t want to miss a minute of this wonderful, painful, challenging, inspiring journey. Because you know, better than almost anyone, how life can change in a moment, an instant, and how none of us are guaranteed a tomorrow.
Here’s just one of my EB Awareness graphics. This quote is available as a Sticker you can purchase in my Zazzle store CLICK HERE to see it! Proceeds go to the costs associated with the upkeep of this website. Anything extra goes into a special fund to help with medical expenses for my son Nicky, who has Recessive Dystrophic Epidermolysis Bullosa.