Most expectant parents don’t consider the possibility that their unborn child could be born with a serious condition. I mean, rare conditions are just that – rare. So the chances of you bringing a child into the world, a child whose health will always be a pressing concern, are pretty slim.
Well, parents Courtney and Evan Westlake already had a child, a healthy little boy called Connor, but were over the moon when they discovered that a baby girl was now on the way.
On December 19, 2011, their newest addition to the family was born. They named her Brenna Westlake.
But unbeknownst to both her parents, their daughter Brenna turned out to be one of the very few babies on earth to have been born with Harlequin Ichthyosis.
Throughout the pregnancy, Brenna’s mother, Courtney Westlake, was completely unaware that her child would be born with this rare condition.
Unsurprisingly, Courtney was very shaken up when she realized, upon the birth of her daughter, that she had an illness that would severely impact her life and potential happiness.
Brenna’s skin appeared to be covered in thick white scales and between them were very sore-looking red fissures.
The skin around her eyes was so tight and her eyes looked almost inside out.
“It was so frightening,” Courtney recalled candidly in an interview with CBS News.
So what is Harlequin Ichthyosis and how does it affect those suffering from the condition? Well, it’s a very serious genetic skin condition caused by a mutation in the ABCA12 gene.
This means that the skin lacks a particular certain protein that helps it form its usual shape. This, in turn, leads to the development of thick, scaly skin in sufferers.
Because both parents have to be a carrier for this very rare mutation to occur, there is a one in a million chance that a child will be born with the disease, according to Courtney.
In the video below, Courtney explains in a lot more detail what it is like to raise a child with such a serious condition:
Brenna’s mother has also been told that there are currently only about 100 cases in the world.
“I really want for people to become educated themselves before they judge or criticize another family or child,” Courtney said.
“I hope that they teach their children understanding and acceptance and empathy for others because I think that would make the world a lot better place for all children, not just those who are physically different.”
The condition is so rare that when Brenna was born the medical staff at the hospital did not know what it was. Astonishingly, they had to resort to texting a photo of the baby to a pediatric dermatologist, and it was only then that they were made aware that she had Harlequin Ichthyosis.
And because Brenna’s skin lacks the protein needed to connect her skin properly, her body tries to overcompensate for this by growing at 10 times the rate that it normally grows.
Some weeks after Brenna’s birth, the scales began to fall off, however, the condition affects far more than just their physical appearance.
Brenna’s body cannot carry out ordinary functions such as sweating meaning that her body often overheats itself.
Brenna is also very vulnerable to skin infections meaning that her family has to take extra precautions. For instance, they are constantly having to wash their hands to rid themselves of any harmful germs.
Unfortunately, because Brenna’s skin is so sensitive to external stimuli, she has already had about 10 skin infections.
In fact, every time Brenna has a bath, her parents have to add bleach to the bath water to kill harmful and potentially fatal germs.
“When I heard she had a skin condition all I thought was she would look different. I had no idea the impact the skin has on our bodies,” Courtney admitted to CBSNews.com.
“Why do parents try to avoid talking to people who look different? What are they afraid of? They could just come up to me and ask how old Brenna is,” Courtney said. “When their child asks why Brenna is so red and swollen, why can’t they just be honest and say, ‘I don’t know, but it doesn’t matter how we look. We’re all unique?’”
With the proper medical attention, Brenna will be able to live a relatively ordinary life. Of course, she’ll always have to take extra precautions as far as her skin is concerned, but she’ll be able to attend a regular school and hopefully live a happy and fulfilled life.
We wish this family all the happiness in their future.