Diagnosis: Primordial dwarfism
Superhero name: Supreme
Superpower: Powerful Voice – By speaking up and telling her story she serves as an inspiration to others.
Sidekicks: Her dog, Gizmo, her family, especially brother Jayden and her teacher, Kay Torrez.
Why Jessalyn is a #ACHero: Jessalyn was born with primordial dwarfism, which makes her physical features petite. She doesn’t let her stature stop her from trying new things or making new friends. She’s also put in hours of speech therapy and endured epileptic seizures, and through it all, she’s always quick with a smile or kind word for others.
When she’s not busy overcoming obstacles: Jessalyn loves to dance – jazz, ballet and hip hop – and loves animals. She also enjoys being a cheerleader at her local high school.
Did you know fact: Nearly every year since she was 2, Jessalyn has attended the Little People of America conference, which takes place at locations all across the U.S.
Jessalyn is a spirited cheerleader, but for a girl born with a form of dwarfism, being in the spotlight wasn’t always where she wanted to be.
When Jessalyn was in utero, she stopped growing. Doctors weren’t sure of the cause, so when she was born 7 weeks premature, her parents were concerned.
“She was really tiny, only 3 pounds, but she was perfectly proportioned,” remembers Jessica, Jessalyn’s mom. “They ran tests and kept an eye on her, but nobody could figure out why she was so small.”
After a month in the NICU, Jessalyn came home. She was 4 pounds and fully developed, eating and breathing on her own.
Jessalyn’s parents took her to specialists all over the state trying to figure out the cause for Jessalyn’s tiny frame. By her first birthday, Jessalyn was meeting infant milestones, but only weighed 12 pounds. While watching a TV program, Jessalyn’s mom learned about a condition that reminded her of Jessalyn. She located the specialist from the show, and made an appointment for her daughter.
Physical characteristics, symptoms and more genetic testing led to a firm diagnosis - primordial dwarfism. This rare condition delays a person’s growth starting at the early stages of development in the womb. After birth, slow growth continues, far behind children of the same age.
“I was thrilled to have a diagnosis because we finally knew how to help Jessalyn and not worry so much about her size,” said Jessica.
Her parents noticed she was having trouble with her speech. Jessalyn started speech therapy at Akron Children’s and continued with it at school from preschool through her freshman year of high school.
“Her speech isn’t perfect, but we can understand her, and it definitely doesn’t keep her from cheering,” said Jessica. “She’s thriving in every other way possible…we’re really proud of her.”
Over the years, Jessalyn didn’t seem to notice her height difference until her younger brother became taller than her when he was 3.
“I told her this is just who you are. It doesn’t mean you can’t try new things or be your best,” said Jessica.
At 7, Jessalyn started suffering from seizures. Her neurologist diagnosed her with rolandic epilepsy. After a particularly bad seizure episode, Jessalyn was hospitalized. An MRI discovered she had Chiari malformation, a structural defect in the base of the skull where the brain and spinal cord connect.
“Two years ago, we thought she’d need brain surgery to correct the defect, but thankfully, we just need to take her in yearly to monitor it,” added Jessica.
Jessalyn also began having trouble sleeping. A visit to the Sleep Center at Akron Children’s revealed she had sleep apnea. To manage it, she wears a CPAP machine at night.
Jessalyn’s challenges have never kept her from staying active, especially dance, and last year she decided she wanted to try cheerleading.
“I said you’ll never know unless you try,” said Jessica. “I didn’t want her to get any special treatment. I wanted her to try out for the squad the same way the other girls did. If she didn’t make it, then it wasn’t meant to be…when we found out she made it, I was so excited for her I cried.”
Although Jessalyn is small in stature, it doesn’t keep her from enjoying high school, cheering on teammates and dreaming big. Someday, Jessalyn hopes to own her own daycare or a dog grooming business.
“Jessalyn used to be shy, but cheering has really opened her up,” said Jessica. “The girls on the squad are really accepting of her and who she is. Jessalyn doesn’t see herself as being different …we’ve always encouraged her to be her best so it’s great to see her doing just that.”
I’m fundraising as part of the FirstEnergy Akron Marathon, Half Marathon and Team Relay. Funds raised through my online fundraising page will assist patients and their families at Akron Children’s Hospital.
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