hard impossible to imagine how it would feel for your brand new, first born son to be 1 of only 10 people in the United States living with Harlequin Ichthyosis. That's 10 people in a population of over 300 million. This was the reality that Super Evan's parents faced at his birth. About a year later, they found out that a sweet little girl named Brenna who lived just 1,000 miles away, was born with the same severe and rare disease. Of course they did not feel joy that another child would have to endure such a challenging skin disorder, but to find companions in the fight must have been life-changing.
You probably remember Super Brenna - she was our very first featured TinySuperhero! Both she and Evan were born with Harlequin Ichthyosis, the most severe of the 5 types of Ichthyosis. Just days before Evan's premature birth (at 30 weeks gestation), doctors were able to predict Evan's diagnosis through 3D and 4D ultrasound. So, when Evan arrived, they were ready with some of the country's experts on the rare disorder.
The biggest problem with Harlequin Ichthyosis is that there is not a cure. Without a cure, Super Evan and Super Brenna will continue their very, very, strict skin-care regimen daily for the rest of their lives. What does that look like? Well, for Evan it includes two 1-hour baths daily where his skin must soak and be exfoliated to manually remove the scales and excess skin. By the evening and second bath, Evan's skin has already covered with scales that need to be removed. (Think of peeling skin after a sun burn, but the peeled skin being the thickness of card-stock at times.) Harlequin Ichthyosis causes skin to produce ten times faster than that of the average person. While the skin is too thick to allow sweat to pass through, it also does not hold in moisture (this moisture is released in a form closer to evaporation than sweat). This inability to contain moisture means that he is at constant risk of dehydration, and the inability to sweat means that he cannot control his own body temperature. In reaction to this, Evan's body builds even more skin as its only way to protect itself. This excessive skin production burns many calories, making it difficult for Evan to gain weight.
Life with Harlequin Ichthyosis means maintaining a balance so that none of these components above (dehydration, weight gain, moisturized skin, body temperature) get out of control. Evan needs to be kept in cool environments so that he doesn't overheat, he needs to have a high caloric intake to make up for the calories burned, he needs to stay hydrated both inside outside so that his skin doesn't dry and crack. Cracked skin is opportunity for infection, a constant risk for people with Harlequin Ichthyosis. In order to keep Evan's skin moist, they use Aquaphor all day, everyday. So, just like Super Brenna's parents, Evan's parents are used to the grease stains that Aquaphor inevitably leaves everywhere - a small sacrifice to keep their son's skin moist and safe from infection.
The commitment to this skin regimen that Harlequin Ichthyosis demands is one that never ends. This disease brings other battles as well. See, when your body produces skin all day everyday, it can build up really quickly. So, when babies are born with Harlequin Ichthyosis and haven't had the chance to be exfoliated or scrubbed for many months, the build up at birth is quite shocking. But Super Evan's family, like super Brenna's, have been inspired and empowered to bring these truths to light. Because this is their truth and these are their babies, and they need a cure! These family's face the sometimes cruel world we live in head on everyday, but are not afraid. Super Evan and Super Brenna are not afraid to look different, in fact, they are incredibly loved and happy kids.
Evan's mom was so thrilled to get this photo above because it is one of the first times that Evan stood unsupported by someone! We were thrilled to see that his TinySuperhero cape was already honing his super powers! Evan is now 2.5 years old. He's quite small for his age, and he's still working on sitting on his own, but he continues to grow and progress. He sticks alongside his sidekick, Super Bruli, and together they bring great joy to many people.
But you see, what is amazing about all of our Extraordinary TinySuperheroes isn't just that they have the will and strength to fight. And it isn't just that they have super powers to defy odds, inspire doctors, and make strangers smile. These TinySuperheroes are empowering people and changing the world. Because of Super Evan, Super Brenna, and Super Wyatt, you (yes you) now know about Ichthyosis. See, Evan empowered his mom to take a stand, to get involved with FIRST, and advocate for a cure for Harlequin Ichthyosis. Evan empowered us to see what strength really looks like and to help in his parents' fight to raise awareness. And now, you know of this incredibly rare disease and have the opportunity to educate others in the fight for a cure.
FIRST is the Foundation for Ichthyosis and other Rare Skin Types. They continue to do great research and support these families. Evan's mom is currently doing a fundraiser for FIRST, a TShirt sale, and I'm sure she would love your support!
You can continue to follow Super Evan's awesome journey at his mom's blog.
For the month of February we will be donating one TinySuperhero cape to a kid like Super Evan for every TinySuperhero cape purchased from our online store below. Help us empower these TinySuperheroes by purchasing a cape for your own TinySuperhero!
TinySuperheroes is a small organization that seeks to empower our little ones — one cape at a time. Proceeds from cape sales enable us to spread the love! We donate TinySuperhero capes to extraordinary TinySuperheroes who exemplify strength and determination as they overcome great adversity. When you empower your TinySuperhero, you help empower others, too!
To nominate a TinySuperhero, email firstname.lastname@example.org.