MARICOPA — Lilyana McLaughlin, a 14-year-old from Maricopa, continues to beat the odds, receiving support and love from her family, friends and community throughout her heart journey.
She has a rare heart condition called dextrocardia with situs inversus. It’s where her heart and all her organs are on the opposite side of her body and flipped over.
It’s been over a year since Lily had her seventh open heart surgery on June 7, 2021, so PinalCentral followed up with her and her mother, Jenna Stetson, on how she’s been doing since then.
She had three open-heart surgeries in 2008 and one in 2010, 2017 and 2018.
Due to this condition, when Lily needs a heart transplant, the doctors will wire everything backwards. It’s better for her to have an adult heart transplant due to various factors.
She’s had other surgeries to check on her condition as well.
Right now, there aren’t any more heart surgeries that can be done. Their next step would be a heart transplant.
Her heart is functioning around 43% capacity.
Lily’s taking medications and going to many doctor visits to monitor her condition and defibrillator.
“All in all, she’s been doing good,” Stetson said. “She’s thriving and we’re just enjoying every day that we have.”
Lily has a defibrillator to help monitor and pace her heart, especially when she’s asleep.
After her seventh open heart surgery, Lily tried to speak, but struggled. The doctor said they probably nicked the vocal cord.
It took her a while to speak again, which was a new experience.
Aside from the second heart surgery, this was the most difficult.
They were in California for longer than they anticipated due to this issue and Lily’s heart rhythm being “all over the place.”
Before her surgery, they spent time at the beach and had a good time.
Lily has many scars from her surgeries, but she doesn’t mind and enjoys doing her own thing.
However, she sometimes throws “caution to the wind” such as eating too much vitamin K and walking up and down the stairs at school instead of taking the elevator.
“She has limits, but she still makes the best of them,” Stetson said.
She attends the recently opened Desert Sunrise High School as a freshman.
In October, Lily decided to go to her high school homecoming and had a blast. It exhausted her, but she enjoyed her time there and slept a lot afterwards.
“That’s what matters is she goes and has fun,” Stetson said.
Lily hangs out with people who are like her at school; they’re a little bit awkward and struggle a little with socializing, but they get along well together.
A profitable hobby of Lily’s is making jewelry.
Last November, she sold her first round of jewelry such as earrings and necklaces at the craft market in the Legacy Traditional School parking lot.
It takes about five minutes or so to create the jewelry.
Stetson is looking to put Lily in an actual crafting class, so she can create more customized pieces.
Her favorite thing about Lily is no matter how hard life gets, she’s always positive. She doesn’t get angry and is always smiling, taking it all in stride, a day at a time, moment by moment.
“It’s unbelievable to see,” Stetson said. “She’s a trooper.”
A challenge with Lily’s condition is wanting to participate in activities with her siblings. They know she can’t do certain things and they’ve been supportive and watch out for her.
During COVID-19, she did school at home for two years. Her friends would attend school and hangout together, but she couldn’t.
She was very happy to go back to school.
“We have to find things for her that she can do,” Stetson said.
Stetson has her own home shop called Stetson’s Boutique. It helps keep her mind busy rather than focusing on Lily’s condition and things to come.
She did lots of arts and crafts growing up. Now, this is the adult version and it’s therapeutic.
Lily is a warrior and beats the odds “time and time again,” Stetson said, but it’s because people believe in her, pray for her, constantly check up on her and send their family positive vibes.
Stetson posts about her daughter’s health journey for Lily and her to look back on.
People follow her story from all over.
Everyone has their own story and those who share help others know they’re not alone in their struggles.
Stetson encourages the community to donate and support research to help people like her daughter Lily along with becoming educated on these conditions.
To follow Lily’s story, visit the Believe in Lily Facebook page.