Brave beauty

Through long, difficult journey, local teen has transcended limitations of rare disease

By ERIN O’BRIEN
Posted 9/2/20

In 2004, Mandy and Lennie Stalaboin were elated to be expecting their first child. In the fifth month of Mandy’s pregnancy, she eagerly scheduled an ultrasound to learn the baby’s …

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Brave beauty

Through long, difficult journey, local teen has transcended limitations of rare disease

Posted

In 2004, Mandy and Lennie Stalaboin were elated to be expecting their first child. In the fifth month of Mandy’s pregnancy, she eagerly scheduled an ultrasound to learn the baby’s gender.

Lydia was the name she and Lennie had chosen for a daughter, inspired by a character in the 1993 movie “Mrs. Doubtfire.” Mandy had a feeling she was carrying a girl. “I loved being pregnant,” she remembers.

Instead of the results they anticipated, the ultrasound appointment revealed unexpected news. One of the baby’s legs had developed at a different rate than the other.

They would learn their pediatrician had guessed correctly; Mandy and Lennie had never heard of Klippel Trenaunay syndrome. The rare genetic disease would affect their child’s muscles, nerves and bones.

When Baby Lydia arrived, a week late, she was beautiful, otherwise healthy, and over 10 pounds.

At one month old, Lydia developed an infection. Fluid from a cyst was entering her bloodstream. She was placed under anesthesia for a procedure in order for the fluid to be drained.

By 10 months old, little Lydia was already walking. However, her left leg continued to grow. Applying compression bandages became a daily routine.

At the Mayo Clinic in Minnesota, when their daughter was 17 months old, a cardiovascular specialist confirmed their pediatrician’s diagnosis. Lydia had her first surgery at Boston Children’s Hospital to remove a cyst around her left ankle, allowing her to wear regular shoes, instead of custom-made ones.

“Debulking” was an option her parents had learned of, but at the recommendation of their pediatrician, they sought the second opinion of a vascular specialist at Boston Children’s Hospital.

At age 4, she had a 10-pound mass removed from her leg which enabled her to wear jeans.

At 9 years old, she underwent another surgery to coil off some veins to prevent clotting. According to her cardiologist, oxygen wasn’t able to reach her heart, thereby affecting her breathing.

In the meantime, for eight years, young Lydia excelled at gymnastics at local meets, her leg wrapped in a compression stocking by her mother. “I did floor and bar routines in competitions. I was pretty good,” Lydia says. She was good enough to earn gold medals and excel at handstands. “I loved it.”

“She was a girly girl,” her mom says with a smile. “She liked dresses and gymnastics.” Her nickname? “Smiley.”

Before facing her biggest surgery at age 11, she even dabbled in makeup. “I was bored in the hospital, so I went on a shopping spree beforehand, watched some YouTube videos, and got the hang of it. I no practiced, and got good at it. I’d like to own my own business.” Makeup was more than a hobby for Lydia. “It kept my mind from worrying about the surgery. It was like therapy.”

As a sophomore at Toll Gate High School, she is currently studying cosmetology, made a little more challenging with remote learning in place. She envisions her future self at Makeup Designory, or MUD, in Los Angeles, and later as a makeup artist to the stars.

Always athletic, she expressed an interest in golf as a child and often plays volleyball with her dad. Now her sights are set on the high school track team.

Through Team Impact of Quincy, Massachusetts, Lydia is a member of the Providence College women’s volleyball team. The two-year program matches children with chronic illnesses with college athletes. The result is a “therapeutic program” in which inspiration is reciprocal. “They teach me new things,” says Lydia.

“She’s learned some techniques from her dad,” adds Mandy. “She’s needed to belong to a team since gymnastics.”

For several years Lydia has participated in the Doughboy Dash, a 5K in Oakland Beach, in support of her friend since kindergarten who has Ataxia Telangiectasia, a rare disease affecting the nervous system and the immune system. “She walked, finished dead last, in the pouring rain, with all of her teachers there. She is selfless,” says her mom.

This year she will run. Her first prosthetic – “a mechanical prosthetic, nothing exciting,” as she describes it – was “a challenge” to walk on. It didn’t fit well, and was painful. Fortunately, she only wore it for a few months. Running was impossible. “The knee would buckle,” she explains. Her new lightweight Bladerunner will allow her to try something she’s always wanted to do. She’ll run.

***

“I’m a ‘P.T.A. Mom,’” Mandy laughs. She modeled volunteer work not only at her daughter’s grammar school, but at the Warwick Animal Shelter’s Car Show fundraiser, where 6-year-old Lydia would tag along.

“I was the first face they would see,” Lydia explained of her job at the registration table. Her cousin Cassidy, one of her best friends, often joined her.

More opportunities for volunteering presented themselves at Children’s Wishes of Rhode Island, where mother and daughter have been regularly seen for over 10 years. Children’s Wishes, founded in 2009 as an offshoot of Make-A-Wish Foundation, is “committed to providing life enhancing experiences to children facing significant medical challenges.” Mandy is currently preparing for the organization’s upcoming golf tournament, while Lydia has always enjoyed choosing toys for the children.

Founding board member and executive director Mary O’Rourke recalls the day a colleague asked when Lydia was going to become a Wish Kid. Mary was stunned. “I did not realize her leg was in an elastic stocking, swollen.”

***

In March 2016, when Lydia was 11 years old, she made an announcement to her parents at the dinner table. It was one they and her doctor had not anticipated for several years. After enduring multiple surgeries and managing daily pain, Lydia told her parents she was ready to have her left leg amputated and be fitted with a prosthetic limb.

The daily compression wrap relieved the swelling, but the pain had to be managed. She had many absences from school. “I just coped with it. As I got older, I said to myself, ‘I’m just done with it.’ But I was conflicted.”

After meeting with the psychologist, and with her parents’ unwavering support, it was to be the course she would take.

But first, after years of volunteering and helping grant other children’s wishes, it was Lydia‘s turn. In April, her wish was granted to swim with the dolphins at Discovery Cove and visit Walt Disney World in Orlando, Florida, with her parents, and because she’s an only child, her cousin Cassidy.

For Lydia and her family, Children’s Wishes, a place where she has volunteered for years, has been their support group. As Mary explains, “We keep in contact with the families and stay on their journey. We know that look when they come down that escalator [at T.F. Green Airport] when they come home after the trip. We don’t impose ourselves on a family, but families welcome some level of involvement.”

Lydia’s surgery was in July. She was 11 years old. Like that 10-month-old baby, she would learn to walk again.

Mandy describes the “phantom limb pain” post-surgery as being as painful as the pain Lydia experienced before. Mirror therapy, placing a mirror at the foot of the bed, “helped Lydia’s brain ‘reset’ when she looked down and only saw one leg,” and the pain diminished over time.

One morning, when her parents were changing her bandages, they were alarmed by the severe loss of blood and called 911. A stitch near an artery had come undone, and Lydia fell into shock. She was rushed to Hasbro Children’s Hospital for a blood transfusion. “They saved her life. They are miracle workers,” says Mandy.

***

“I had my insecurities. But this is so much better,” Lydia says of her new life.

“I still have 10 percent of the disease left in my body,” she explains. It hasn’t held her back.

Lydia has blossomed into a young woman with poise and empathy beyond her years. “She’s an old soul,” says her mom.

“She has a big heart, she’s a good speaker, she’s great with little kids, and she’s confident,” Mary O’Rourke begins in her effusive description of her protégé.

Mary recalls the day Lydia took a day off school to bake Christmas cookies as a way of giving back. She delivered them to Baby Sean, who at 9 months old had just one Christmas wish: Christmas cookies. When she presented them to Sean and his family at Boston Children’s Hospital, “she made his family feel not so alone.”

“This time she was there as a visitor, not a patient,” her mom said.

Later that same day, Lydia accompanied Mary to deliver a gift to a young girl at the Ronald McDonald house in Charlestown, Massachusetts. She brought along a gift, just like one she had received as a little girl.

“That’s why she does it; he knows how they feel,” her mother says of her interaction with young patients.

***

It’s been five years since Mary O’Rourke stopped by Lydia‘s house with the set of golf clubs the day before her surgery. That 11-year-old girl grew up to become Mary’s golf partner, as they enter their fourth tournament this year. The sport has helped to fill a void. “She was a gymnast, and she still golfs; I can tell when she’s ‘in her zone.’ She’s an athlete!”

She’s also a regular teenager. Her best friend is Emma, who she met after her surgery, in gym class. “She’s a really good listener.” Although they now attend different high schools, they are still close, living only 10 minutes away from each other.

As Lydia approaches her 16th birthday, she looks forward to sharing a “sweet sixteen” jeep with her dad, whom her mom affectionately describes as “a car nut.”

Lydia belongs to the National Junior Honor Society, fulfilling its tenets of scholarship, service, leadership, character, and citizenship. Her essay on Children’s Wishes of Rhode Island, and why she gives back, relates the story of how she came to be a volunteer.

Lydia is the 2020 recipient of the Children’s Wishes Journey Award. “She embodies the courage and spirit of a Wish Kid,” Mary says.

Her courage and spirit do not go unnoticed. Photographer Jerilyn Faciano of JL Photography of South Kingstown was quite taken with Lydia during a recent photo shoot.

Lydia, wearing her confident smile and black Nike attire, stands strong with her black Bladerunner, in a photo taken by Jerilyn on the high school track.

Glowing, Lydia wears a flowing, emerald green chiffon dress, adorned with a lace bodice, in a garden setting in another. Under the whisper light folds of her skirt her Bladerunner is barely visible. It was the dress intended for her acceptance of the Journey Award, at a ceremony which has been postponed until 2021. “It’s so my color! I’m so excited to wear it!” she beams.

“She is truly inspiring and I was so touched to have the privilege of capturing this brave beauty!” Jerilyn shared on her Instagram account.

Her true beauty inside is reflected in her selfless attitude towards others. According to her mom, she hesitates using the handicapped parking placard “because a veteran might need the parking space.”

She has no patience for those who would make fun of someone who looks different. “People looked at me the wrong way,” she said of wearing the compression stocking. Had they looked closer, they would have instead seen a brave beauty.

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