a hand displaying features of Harlequin Ichthyosis

Infant born with rare skin condition becomes miracle to parents

Courtney and Evan Westlake were excitedly awaiting the arrival of their second child, a baby girl. The pregnancy had gone well and according to the ultrasounds everything was normal. The day Courtney gave birth, however, brought them a big surprise. Their little girl Brenna was born with a skin condition called Harlequin ichthyosis. This is how they are overcoming their little girl’s condition and educating others on a different kind of beauty.

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A Shock On Delivery Day

In 2011, When Courtney went into labor with her second child Brenna, she and her husband Evan were excited. They were finally going to meet their baby girl and their son Connor’s little sister. When Courtney gave birth, however, she couldn’t even hold her little girl. The doctors had to whisk Brenna off to intensive care. She wasn’t moving, she had an extremely high temperature, and her body was covered in sores and thick white scales. It was two weeks before they could hold their little girl. (1)

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Brenna with Harlequin Ichthyosis
Image Credit: Blessed By Brenna

After an examination by the doctors, Courtney and Evan learned that Brenna was born with a hereditary disease called Harlequin ichthyosis. Essentially, this disease causes Brenna’s body to produce skin at a rate 10 times faster than normal. This, naturally, causes a number of problems.

Read: Dad without Arms and Legs Raises 2 Daughters after Their Mom Abandoned Them as Babies

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What Is Harlequin Ichthyosis?

Harlequin ichthyosis is a serious genetic condition that primarily affects the skin. With this condition, a baby is born with plates of thick skin that crack and split apart. They can pull at and distort facial features, as well as cause problems with breathing and eating. The child’s skin will be red and swollen. They are also unable to sweat, which means being outside in hot weather can be very dangerous. There is currently no known cure for the condition. (2)

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A Different Life

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The Westlake’s daily life naturally looks quite different now than what they expected it to be as a family of four. Before Brenna was born, Evan joked about having to learn to braid hair. Now, his nightly routine is gently bathing her with a cloth to wipe away extra skin and combing what little hair she is able to grow.

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Brenna with Harlequin Ichthyosis being held by father
Image Credit: Blessed By Brenna

There are many physical challenges that come with Harlequin ichthyosis. Plenty of extra care and doctor’s visits are something that the couple deals with daily. Despite it all, they are incredibly positive people who take it one day at a time. In an interview, they talked about how they know there is nothing they can do to change the situation. Instead, they have chosen positivity and focused on loving their little girl as much as possible.

Read: Sweet 10-Year-Old Girl with Rare Facial Tumor Ignores Those Who Laugh And Inspires Us All

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A Different Kind of Beautiful

The couple has been very vocal about their daughter’s condition since the day she was born. Courtney, in particular, has taken on the task of educating people about Brenna’s condition. Specifically, she is trying to teach people how to treat a child who looks different as well as how to teach their children about it. She is often quite disheartened by comments she hears from strangers, but especially by the way parents at the park treat Brenna in comparison to other children.

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“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’?”

Brenna and her brother
Image Credit: Blessed By Brenna

Courtney writes a blog called Blessed By Brenna and has also written a book called A Different Beautiful.

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Just A Regular Kid

Aside from her skin condition, Brenna is just like any other child. She loves her family and her older brother absolutely adores her. She likes to read bedtime stories at night and enjoys playing just the same as any other child. Her family describes her as having a big personality and lots of confidence. Thanks to her family who supports and loves her, she is able to go into the world with confidence despite looking different. (1)

Brenna and her mother
Image Credit: Blessed By Brenna

The next time you are out and see an adult or child who looks different, don’t shy away or make rude comments. Remember Brenna and her story and think before you speak or act. We have the power to make the world a more welcoming place for all.

Keep Reading: ‘My Daughter’s Rare Disease Was A Mystery For Years. Here’s How We Finally Got A Diagnosis’

Sources:

  1. Mommy Matters: The Westlakes.” Youtube. Jon. July 27, 2016.
  2. Harlequin ichthyosis.” Rare Diseases
Julie Hambleton
Freelance Writer
Julie Hambleton has a BSc in Food and Nutrition from the Western University, Canada, is a former certified personal trainer and a competitive runner. Julie loves food, culture, and health, and enjoys sharing her knowledge to help others make positive changes and live healthier lives.
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