Parents Of Butterfly Baby Speak Out About Son's Painful Condition
Cailyn Finkel 4/5/2018
Any new parent will agree that all we can hope for is our baby will come out into the world healthy and happy. Unfortunately for Adam Leptich and Crystal Normand, their joy quickly turned to concern when their son Leo was born.
Now they're in a desperate search for a cure, all while trying to stay positive about the future ahead.
Instead of celebrating with the parents after Leo's birth, the emergency c-section doctors looked at them and said something that took their breath away. Crystal spoke to CBC News about the seven shocking words doctors said immediately following her son's birth:
"We don't know what's wrong with him."
At first she was confused by their statement. But when Crystal looked down at her baby boy, she noticed the skin on his feet had been rubbed off completely.
This was a nightmare scenario and she didn't know what to do! Even the doctors were baffled by what was plaguing the newborn.
After researching the symptoms, medical staff approached the terrified couple and revealed that little Leo was something called a "Butterfly Baby." Even though the name sounds sweet, the reality was anything but...
Leo was diagnosed with a rare condition called epidermolysis bullosa (EB) -- this means his skin tears and blisters with the slightest touch. While this condition is relatively unheard of, it actually occurs in one in every 20,000 births.
Crystal told CBC News that this condition means they have to be extremely careful when handling their son. Even common tasks like getting dressed can be a painful experience for Leo.
"Any type of slight friction can cause blisters or else his skin to rub right off. So we have to be careful with things like seams in clothing even."
Thankfully, their community, family and friends have rallied around them and have helped in the best ways they can. Without their love and support, Crystal knows that this could be much worse.
"We've never felt alone in this process and that has been the most vital thing in us coping with this."
Sadly, there is no cure for EB and the treatment plans are limited -- but there is good news. Several experimental medications are being tested now and a viable treatment may be on the market before Leo hits grade school!
Crystal told CBC News that she's using this sense of hope to keep going and remain positive on the darkest days.
"Of all the genetic conditions, this is probably the one that's got the most hope for a cure or a really effective treatment, and it's hopeful that will be done in the next five years or so... It's kind of an exciting thing for us, the prospect that he could be healed by the time he's ready to attend school."
We can only hope that a treatment comes quickly and Leo will heal once it's released.