Crystal Normand and Adam Leptich should have been over the moon as they welcomed their son into the world. But as soon as the C-section procedure was completed, doctors said something concerning. That’s when the parents knew that something was wrong.
Crystal Normand and Adam Leptich are a couple from Saskatoon, Canada. They are proud parents to a four-month-old boy, but their journey thus far has not been a smooth ride. It all started when Normand was in the operating theater.
The mom-to-be had been taken for emergency surgery after doctors decided that a Caesarian section was the best method of delivery for Normand. But once their little boy, named Leo, was out, Normand and Leptich heard a doctor say something chilling.
“We don’t know what’s wrong with him,” were the horrifying words that no brand new parent ever wants to hear. It turned out that the doctors had been stumped by an abnormality on the baby’s body. The skin on Leo’s feet had been rubbed away.
In fact, national radio and TV broadcaster CBC reported in April 2018 that at birth the skin on the baby’s feet had been “sheared off.” Medics later realized that the damage to Leo’s skin had been caused by a rare skin condition affecting a tiny percentage of births.
Indeed, Leo had been born with a condition that affects on average only five babies out of every 85,000 to 100,000 born. Known as Epidermolysis Bullosa (EB), the illness renders skin vulnerable to injury when subjected to even the tiniest bit of friction.
Sometimes, vulnerable children like Leo, susceptible to skin damage at the slightest touch, are dubbed “butterfly children.” Despite the affectionate-sounding nickname, living with EB is undoubtedly incredibly difficult both for the sufferer and their carers alike.
Normand and Leptich have to go to great lengths to protect their son. Leo’s epidermis is so sensitive to rubbing that they have to be extremely careful with him. They attach padding and bandages to various parts of his body every day to stop his skin from being damaged.
Not only that, but the devoted parents have to be make sure Leo’s clothes are appropriate too. Even an awkward seam could cause blisters. On the road, the baby’s condition must also be considered. The fragile tot sits in his car seat with foam between his legs to prevent chafing.
“The first few outings, every time we went out, he would have a different wound in a different place, and it was never what we anticipated,” Normand told CBC in April 2018. Now the parents plan their route in advance to try and avoid overly bumpy roads.
Although the parents have been doing their best to protect their son from his condition, it’s been difficult. “Sometimes we feel like we’re fighting a losing battle just to keep Leo safe from himself,” Normand wrote on a Facebook page dedicated to her son.
“We keep our eyes on him at all times because a rogue hand can have a devastating effect. And most heartbreakingly for us as parents, when we make one small movement the wrong way and contribute to an injury,” she wrote, emphasizing just how delicate an EB sufferer’s skin can be.
But, despite the difficulties they face as a family every day, they still try to look on the bright side. Speaking to CBC, Normand said, “We try to find the positive in every day…Every smile, every little thing, we don’t take for granted with him.”
Heartbreakingly for Leo’s family, there is currently no cure for EB. However, there is some hope down the road. Scientists are working on a gene-editing process which could see EB sufferers overcoming the condition, perhaps even within the next five years.
“Of all the genetic conditions, this is probably the one that’s got the most hope for a cure or a really effective treatment,” Normand optimistically related to CBC in April 2018. But for now she gets through the tough days by sharing her experiences with EB online.
The Facebook page which Normand set up for her son is called “Brave Little Lion: Leo’s Life With EB,” and it’s where she goes to share updates with family and friends. Not only that, but it’s proven itself to be a useful emotional prop for Normand in rough patches.
“Personally it was really almost therapeutic or cathartic to speak about it, take some of the power away from the condition,” she explained to CBC. What’s more, Normand found solace in another Facebook group designed for families coping with EB.
For Normand and Leptich, speaking to parents in similar situations has proved invaluable. Emotionally, it has been great for them to be able to talk to other people and feel supported. But the online community has also been beneficial in a practical sense.
Leo’s parents received tips on how best to care for a child with EB from people who really understood what it’s like. And they even passed on some of the information to Leo’s doctors. Thankfully, Normand and Leptich say that they “have never felt alone in this process.”
Normand praises her family and friends for being there for them. But it’s not just close acquaintances who have shown their love for Leo. Strangers, too, have lent support, and even the couple’s favorite box lacrosse team, Saskatchewan Rush, gave them a shout-out at a recent game to show common cause.