From Harlequin Baby to Surprising Transformation: What Are People Afraid Of?
There are mothers and fathers who give up their children – just because they look different.
That’s why it’s so important that we bring inspiring stories to light, stories in which parents and children show that no challenge is too great, as long as you stick together.
It’s also an important lesson for all of us who have ever judged someone based on their appearance.
Courtney and Evan Westlake were living a happy family life with their son Connor when they discovered that Courtney was pregnant again. Of course, the couple was very excited when they realized that their family would grow and one person would be added. And like many other parents, they looked forward to the ultrasound when they would see the little baby for the first time. Every time they left the hospital, the doctors reassured them that everything looked good with their developing baby. A few months into the pregnancy, Courtney and Evan discovered that they were expecting a girl: Connor would have a little sister! The couple was overjoyed and began to imagine what life with a daughter would be like. “I have to learn how to braid her hair now,” laughed father Evan.
The big shock after the birth
The big day came just a few weeks before New Year’s Eve 2011. The girl was born, but all the couple’s plans to introduce the girl to their new home were disrupted. Their daughter Brenna was born covered in thick white scales. She wasn’t moving, had an extremely high body temperature, and her whole body was covered in sores. Brenna needed immediate intensive care – or she wouldn’t survive. Two weeks later, Courtney and Evan were able to hold their daughter for the first time. They discovered that Brenna was born with a severe hereditary disease called Harlequin ichthyosis. The disease causes Brenna’s body to produce skin 10 times faster than normal. It causes redness all over her body and also affects her eyes, mouth, nose, and ears. The disease is untreatable and often fatal.
With all the physical challenges that come with Harlequin ichthyosis, the parents knew they had a difficult road ahead. Fortunately, she received professional treatment from HSHS St. Jan’s hospital. A team of doctors and caregivers managed to keep Brenna alive through a combined effort. As a result, she was discharged from the intensive care unit 38 days after her birth. “Many babies with Brenna’s condition die within hours or days of birth, and we have no doubt that the amazing care the hospital has provided has kept her alive during that critical time,” said Courtney.
Strangers stare and point
Courtney often encounters strangers who point, make loud comments, or ask insensitive questions when she is out with Brenna. It makes her sad. She can understand that children are curious about Brenna because she has such a unique appearance. But what really upsets Courtney are the reactions she gets from many parents. They pull their children away from Brenna as soon as they see her and tell their children to be quiet when they come near her. Courtney would rather have parents come over to talk to her and Brenna, instead of looking away and leaving the playground. At the same time, Brenna is a proud and confident little girl who will not be suppressed by anyone. She has confidence in herself, thanks to all the support from her family.
A little fighter
Especially big brother Connor, who loves his little sister. “Why do parents avoid talking to people who look different? What are they afraid of? They can just come up to me and ask how old Brenna is,” says Courtney, continuing: “If their children ask 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 are all unique’?” Despite their difficult days, Evan, Courtney, and Connor are proud of their little fighter – and rightfully so. Every evening, father Evan bathes his daughter, which must be done carefully and methodically every day. The same man who joked about braiding his daughter’s hair now gently but firmly massages her with a cloth to wash away the flaky skin. Due to the disease, Brenna also doesn’t have a lot of hair, but her father carefully combs the hair she does have every day. And in most ways, Brenna is just like any other child. She loves her family, and plays and listens to bedtime stories with her father and big brother. “Our main activity every day is her bath, so her body can absorb the moisture and we can rub off any extra skin that has accumulated over the day. This takes about 1.5 hours, but we all love that it’s also built-in time to get one-on-one contact with her. She still gets about 4-5 applications of Aquaphor lotion on her whole body per day, and she will always need lots of extra calories to compensate for her excess skin production – thankfully she loves to eat!
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Her parents are confident that Brenna can do whatever she wants in life, even if life doesn’t go exactly as planned. Courtney used to write regularly about her family’s life on her blog, Blessed by Brenna, and she also wrote a book, A Different Beautiful, which was published in August 2016. “Brenna’s disease has affected our family in so many ways. It truly affects us every day. But it doesn’t define us, and it doesn’t define her. It was extraordinarily challenging and stressful when she was young, and we learned to care for her needs. But after a while, it became second nature, and nowadays it’s much easier because she can communicate how she feels and what she needs,” said Courtney in May 2022.
The family hopes that their open and emotional story can help others understand and appreciate people who look different. During her time on Earth, Brenna has done a lot to raise awareness of the rare disease. Today, this 12-year-old sunshine has proven that nothing is impossible. “I always thought that because of her physical limitations, Brenna wouldn’t be able to participate in team sports. In the fall of 2021, she decided to join a soccer team. She has been playing to the best of her abilities for eight months and has enjoyed every game with her teammates. At this week’s game, she scored a goal. We are proud that she is participating in something unexpected and far outside her comfort zone,” says Brenna’s father, Evan. Brenna loves animals and, although she is only 12 years old, she has already started her first business taking care of cats.
READ MORE: Boy with rare skin condition gets modeling contract – “Being different is not something we should hide”
