Brenna was truly born a TinySuperhero. On December 19, 2011 Brenna joined the world with a very rare and severe skin disorder called Harlequin Ichthyosis. Currently only about 12 out of 311,591,917 Americans are diagnosed with Harlequin Ichthyosis. Here’s how Brenna’s mom explains the disorder – “Without the protein that helps the top layer of her skin form like it should, Brenna’s skin doesn’t do its job right – it doesn’t maintain her body temperature, it doesn’t hold its moisture and it doesn’t keep out bacteria, leaving her very susceptible to infection.”
It wasn’t too long ago that Harlequin Ichthyosis was a fatal diagnosis, with most babies only living a few days. But, Super Brenna just celebrated her first birthday(had an awesome Very Hungry Caterpillar celebration) and with more research, medical advancements, and Brenna’s super powers, Brenna will be changing our world for many, many years to come!
Brenna has been displaying her super powers and transforming the lives of people around her every day since she was born. In one short year she has fought infections, undergone surgeries, stole the hearts of many nurses, and taught many doctors many things they never knew!
Luckily, one of Brenna’s super powers is endurance because the fight against Harlequin Ichthyosis is ongoing. But while Brenna continues to fight against the complications that skin conditions like this cause, we think that Brenna’s truest superhero power is the way that she is changing hearts of people around the world. Brenna is redefining beautiful. Her skin may look different and she may wear Aquaphor instead of smelly lotions, but one look at her smile will melt your heart! There’s no question that Brenna is beautiful inside and out.
Like most amazing Superheroes, Brenna has some rock-star sidekicks. No doubt that Brenna’s perseverance, strength, and willpower have brought her this far, but she’s got some mighty hands helping her out! Brenna’s mom, dad, and 3 year old brother Connor have really gone all out for their TinySuperhero! Harlequin Ichthyosis is tricky because it requires a constant balance of avoiding infection and keeping her skin moist enough to prevent cracking, but dry enough to prevent excess skin growth. Brenna’s skin grows at about 10x the rate of normal skin. Brenna’s sidekicks are committed to treating and preventing excessive skin growth and infection 24/7. Oh, and her brother Connor is sure to teach her all there is to know about Lightning McQueen.
We are thrilled to introduce you to Super Brenna, but her story reaches depths far beyond this intro. I encourage you to follow her mom’s blog and learn more about Brenna and Harlequin Ichthyosis : Blessed By Brenna. We are inspired by Brenna’s family daily and truly thank them for sharing their story.
I think Brenna’s TinySuperhero status is captured in this quote from her mom: