IlliniThon News Story – Part 4 (Brenna’s Story)

For my final (and maybe favorite) story, I wrote about miracle child, Brenna Westlake, her family, and her rare skin condition. The people I got to interview for this story were wonderful and I’m looking forward to seeing the Westlakes at IlliniThon in just 10 days!!

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When Courtney Westlake takes her four-year-old daughter Brenna to the grocery store or the library in Springfield, they are used to getting stares and questions.

“We were walking to the library and this old man passed us. He stopped and turned around and stared at us the whole rest of the way we were walking,” said Courtney. “Her skin is just a surprise to people, they don’t expect to see this little girl who looks like she has a severe sunburn because they’ve probably never seen it before.”

11713840_1128342500525747_7206501105167832282_oBrenna has a very rare genetic skin disorder, harlequin ichthyosis. Harlequin is the most severe form of ichthyosis, a group of skin disorders. Brenna’s genetic code is missing a gene, causing her skin to form incorrectly. Because of this, her skin grows very fast and is very thick. It also has to shed more rapidly, causing her red, flaky skin that can look like a peeling sunburn.

Dr. Joseph Conlon, the Westlake’s pediatric dermatologist, explained the medical issues beyond Brenna’s unique appearance.

“[Our skin] keeps everything in that’s supposed to stay in and everything out that’s supposed to stay out,” explained Dr. Conlon. “[Brenna’s] skin is not able to do everything that it needs to do.”

He went on to explain that our skin regulates our body temperature and moisture. It also keeps infections and other harmful things out of our body. Since Brenna’s skin cannot do all of those things, she is vulnerable to dehydration, overheating and infection.

To avoid those dangers, Brenna and her family have to take special care of her skin. They apply Aquaphor, a thick lotion, all over her body four to five times a day. Every evening, Brenna takes about a 45-minute bath. The long bath allows her skin to soak up the moisture and helps exfoliate the skin that has built up in the last 24 hours.

There are also lots of little things that the Westlakes constantly have to be thinking about. They wash Brenna’s hands a lot to help her avoid germs and infection. They closely monitor her temperature to make sure she is not too hot or too cold. In the winter, you will often find her wrapped up in a blanket and in the summer she has a special vest that helps keep her cool and prevents overheating.

Brenna eats a lot because her body uses so much energy to produce her extra skin. She also has to drink a lot to stay hydrated.

Courtney explained that sometimes Brenna’s care can be exhausting and says it is difficult to think about how Brenna will have to do these things every day for the rest of her life. She also knows that her daughter will always be explaining to people why she is different and what harlequin is.

Evan Westlake, Brenna’s dad, described the condition with the ‘bricks and mortar’ analogy. He explained that everyone’s skin is made of bricks and mortar, but Brenna’s skin is missing the mortar. Her body knows there are gaps in her skin so it tries to produce more skin to heal those gaps, which is what normal skin would do for a cut. However, the new skin that her body produces is also faulty, leading to thicker skin that still doesn’t seal like it should. Brenna then has to get rid of the extra skin, which is why it flakes off and peels like it does.

Harlequin ichthyosis is a recessively inherited genetic disorder, meaning that a baby must inherit one recessive gene for the disorder from each parent.

“The chance of both of us having the genetic mutation for this is one in a million,” said Courtney.

The condition is so rare that accurate statistics cannot be calculated and the Foundation for Ichthyosis and Related Skin Types (FIRST) simply lists harlequin ichthyosis as “very rare.”

The Westlakes said they know of about 20 other people in the United States who also have harlequin ichthyosis. They have had the opportunity to meet these people through FIRST.

FIRSTFIRST was started in 1981 in California for families who are affected by ichthyosis. It started as a volunteer organization but is now run by a team of full-time staff members in Philadelphia. The foundation raises money for ichthyosis research. It also helps provide support for affected families by connecting them via the Internet and at the National Family Conference every two years.

“I think a combination of [having full time staff and the age of the Internet] really has gotten us to where we are today,” said the Chief Executive Officer of FIRST, Jean Pickford. “We now have over 5,000 connected families in our database.”

The Westlakes are grateful for the support of FIRST and love to help other families that have babies born with ichthyosis. There are only a few official medical documents that talk about harlequin and a few doctors that have treated it before. The Westlakes and their medical team used all of the resources available to them to help Brenna and are happy to share their experiences to help others.

When Brenna was born, her parents’ first thought was that she just needed to be wiped off, but the thick, white coating on her little body couldn’t be wiped off. Within an hour, Brenna was rushed to the neonatal intensive care unit at St. John’s Hospital, and Springfield’s only pediatric dermatologist was sent a picture of Brenna. Dr. Conlon immediately diagnosed Brenna with harlequin ichthyosis.

“I look at those pictures and I just remember the fear and the worry and the stress that we had at that time,” said Courtney as she looked through a photo album. “I’m glad that we can look back at those pictures from her birth now and have her with us today. Now it truly is a big celebration; it didn’t feel like a celebration back then.”

Brenna is just starting to notice her baby pictures, but she doesn’t realize that they are different than anyone else’s. She doesn’t ask about her skin or see it as something that makes her different; it’s just a part of her world.

“We don’t talk about [Brenna’s condition] that much, not because it’s something we don’t want to talk about, but it’s just not an issue for our family right now,” said Courtney. 12510454_1239170502776279_854214510338747551_n“We always want her to know that no matter how the world outside is treating her, at home she’s just part of our family.”

Evan and Courtney want Brenna to know that she is an amazing girl, and that has nothing to do with her skin.

“Above all, it has always been this huge love for her and this gratitude that she is a part of our family,” said Courtney. “With that being the top emotion, it’s easy to help her see that.”

“Who’s the most beautiful girl in the world?” Courtney asked as the family sat in the living room.

“Me!” exclaimed Brenna, as she pointed to herself and danced around.

Brenna is a spunky and outgoing four-year-old, according to her parents. She is very social and loves school and running errands with her parents.

Courtney describes her six-year-old son, Connor, as sensitive, cautious and thoughtful. Most importantly, he loves his little sister.

“He is just the perfect brother for her,” said Courtney.

Connor, who has normal skin, is also starting to defend his sister and explain to other kids that she just has a “skin addition.”

“I just like to play with her!” said Connor with a big grin, as he hugged his sister, almost knocking her over.

Connor isn’t the only one who enjoys spending time with Brenna.

“I spent a lot of time with Brenna last year at [IlliniThon],” said IlliniThon’s family relations director, Lauren Adrian. “I was just drawn to her. She’s such a cutie, how could you not love dancing with her?”

Brenna loved being in the spotlight at her first IlliniThon in 2015. IlliniThon is an annual Children’s Miracle Network event at the University of Illinois that raises money for St. John’s Children’s Hospital in Springfield, Ill. Evan and Courtney were amazed by how excited all the students were and how much money they raised.

“We know first hand what that money actually does go to. We’ve used so many of the resources that they’re raising money for so that’s really neat to be a part of,” said Courtney.

The members of IlliniThon are happy to have Courtney on board, too. A few days after Brenna was born, Courtney started her blog, Blessed by Brenna. Adrian explained that the members of IlliniThon love to be able to share links on social media to blogs like Courtney’s.

“[Courtney] being so connected with the Internet makes it easier for people to understand why we do what we do,” said Adrian.

The students who plan IlliniThon have been working to make this year’s event the biggest and best one yet. IlliniThon will take place on April 23, 2016 and many miracle children, like Brenna, and their families will be in attendance. The IlliniThon executive team is passionate about what they are doing and it’s all for the kids and families.

“What always inspires me about the families is their ability to adapt to the situation and only find positives within it,” said Adrian.

The Westlake family has definitely done that, as Courtney uses her journalism degree to write about the importance and beauty in differences. She wants others, especially her daughter, to see and celebrate the beauty in the world.

“Life doesn’t always look like what we planned,” Courtney wrote on her blog. “But it doesn’t have to be perfect to be wonderful. Beautiful can be found everywhere, when we take the time to see it.”

 

To join me in supporting IlliniThon and kids like Brenna, make a donation!

Also read my other IlliniThon News Stories:

IlliniThon News Story – Part 1

IlliniThon News Story – Part 2 (Trick or Treat For the Kids)

IlliniThon News Story – Part 3 (Peyton’s Story)

IlliniThon News Story – Part 3 (Peyton’s Story)

Our third major assignment in my journalism class was to write a profile. I had the privilege of profiling the family of miracle child, Peyton Skrysak. Their story is one of heartbreak mixed with joy and hope.

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“Peyton has a really amazing story,” said IlliniThon’s family relations director, Lauren Adrian. “She was – she is a triplet. Her family likes to say she is a triplet because she is.”

Peyton Skrysak and her parents, Ryan and Stacey, are one of the many families that have been helped by St. John’s Children’s Hospital, the Children’s Miracle Network and IlliniThon. IlliniThon is an annual Children’s Miracle Network event that raises money for St. John’s Children’s Hospital in Springfield, Ill.

In 2013, Stacey Skrysak, became pregnant with triplets. The Skrysaks knew her pregnancy was high risk but they never imagined what was coming.

“You never know what curveballs life’s going to throw at you,” said Ryan.

As a news anchor first for News Channel 17 and now for News Channel 20, Stacey’s pregnancy and time on bed rest were very public, and she has allowed viewers to keep up with Peyton’s life.

On June 23, 2013, only 22 weeks and six days into Stacey’s pregnancy, her triplets were born. Babies aren’t usually considered viable until 23 weeks, but doctors decided to give her children a chance.

Abigail was born first and only survived for about two hours because her oxygen levels never stabilized. She was Peyton’s identical twin and the Skrysaks love to imagine them together and think about all the trouble they would be getting into.

Stacey explained that Abby was having the most complications and it was amazing that she hung on for as long as she did. That extra time gave her siblings a chance to live.

“Abby was a big fighter, even though she didn’t survive,” Stacey said. “We’re very grateful to her because she really saved our other children’s lives.”

Seventeen hours later, Parker and Peyton were born and immediately taken to the neonatal intensive care unit (NICU). Stacey was also rushed to the intensive care unit (ICU), because she had an infection and her body went into septic shock after giving birth.

“I had to deal with thoughts that I hate to go back to,” said Ryan. “I had two children in the NICU and my wife was very sick in the ICU.”

As soon as Stacey’s television viewers learned about Abby’s death and Parker and Peyton’s stay in the NICU, Stacey received hundreds of emails. Gifts were sent to the NICU for Parker and Peyton from people the Skrysaks had never met.

“I realize that I had a whole community really around the world supporting me. That’s what’s helped me the most, and two years later, that’s still what helps,” said Stacey.

While in the NICU, Parker was the one that all of the nurses wanted to take care of.

“He was just a sweet little boy. He was a little blondie and just precious,” recalls his mother.

However, like many premature babies, Parker had many other health issues. He had endured one surgery and was slowly becoming paralyzed. Parker died when he was 55 days old.

“People are always like ‘I’m so sorry for your losses,’” said Stacey. “I look at it as: I got two precious months and I have these pictures that are just gorgeous of him. He already showed his personality in those first two months.”

Peyton, now two and a half years old, was in the NICU for four months. She had surgery on her eyes, heart problems and a few other issues. Peyton’s nurses nicknamed her the princess or diva of the NICU because she could really be a pain to take care of.

“She’s got this personality,” explained Stacey with a smile. “She’s got all three of the kids in her and that’s what I love. We always say we’ve got her brother and sister living in there because no one has this much personality.”

Peyton has a few developmental delays in her speech and the strength of her muscles because she was a preemie. She works with many therapists and they have helped her catch up with other kids her age.

According to her mother, Peyton really thinks she’s “one of the big kids” when she spends time with the college students involved with IlliniThon. The family attended IlliniThon for the first time last April and also visited campus to share their story at Illinois Sights and Sounds, the freshman welcome event, in August.

“When we got up on stage and shared our story, Peyton was walking around across the stage clapping for herself and telling people hello and just dancing with the kids,” said Stacey as she described their first IlliniThon experience.

The scene was similar when the family visited for Sights and Sounds.

“She was just running around the football field and everyone was just obsessed with her because she loves to dance,” said Adrian.

IMG_2616-e1442551337413“The best thing [IlliniThon has] helped with is seeing our daughter blossom and bloom,” said Ryan. “What they do for the kids and how they support the children is very uplifting for me. It’s nice to see the college kids support people and try to help them in any way that they can.”

Stacey has made it her mission to use her family’s story, the memory of her children and her platform as a television anchor to help other families. Her boss has allowed her to raise awareness about issues like child loss and NICU families. She also shares the joys and struggles of raising her surviving triplet and remembering her two angels on her blog, Perfectly Peyton.

“After [Abby and Parker] passed away, I said ‘there’s got to be some good that comes out of this,’” said Stacey. “It made me realize that I can use myself for the better. My children have made me stronger than I ever thought imaginable.”

The Children’s Miracle Network and IlliniThon love having Stacey on board.

“Stacey’s always very open about sharing their story, especially because it’s definitely a hard one to tell,” said Adrian. “That’s been a blessing for us at IlliniThon, to have someone who’s so open about such a powerful story because it only helps people understand why you should do it.”

The members of IlliniThon’s executive team work hard all year to raise money and get ready for the event.

“Being able to see [Peyton] and play with her and pick her up and see that her hair is getting longer, you really get to see that this is the reason why I’m doing this,” said Caroline Eichelberger, a member of IlliniThon’s executive board.

All the members of IlliniThon’s executive board love the kids. For many of them, the best part of being involved in the organization is getting to know the families and their stories.

“I always tell [Peyton’s] story,” said IlliniThon’s fundraising director, Courtney Wright. “First of all, she’s adorable, but she is actually the youngest baby ever to survive at St. John’s Children’s Hospital.”

“She’s pretty much the epitome of what a Children’s Miracle Network child is because she really is a miracle,” said Stacey. “There is no reason why she should be alive today.”

 

To join me in supporting IlliniThon and kids like Peyton, make a donation.

Read my first IlliniThon News Story about the event or my second story about Trick or Treat For the Kids!