Liberty teen has rare condition of only 100 in US


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By SAMANTHA PHILLIPS

sphillips@vindy.com

LIBERTY

Jessalyn’s Journey

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Jessalyn Hartsfield, 15, was born with a rare form of dwarfism. She is now a Liberty High School cheerleader.

Jessalyn Hartsfield has a lot in common with other freshmen. She’s a sweet, happy girl who loves cheerleading and looks forward to her Sweet 16 birthday party.

Unlike her peers, however, she is the size of the average 9-year-old.

Jessalyn, 15, suffers from a rare condition called primordial dwarfism, which delays a person’s growth starting at the early stages of development in the womb.

According to the Nemours Foundation, only 100 people in the country are diagnosed with the condition. Five are estimated to live in Ohio.

“[Doctors] told me when I had her that she wasn’t going to make it 24 hours,” said her mother, Jessica Rivera. “So, seeing her grow up and do all these things doctors said she would never do is amazing.”

A SPECIAL LIFE

People afflicted by primordial dwarfism like Jessalyn are expected to have decreased life expectancy, and her mother says she may always have to live at home.

There are different types of primordial dwarfism with varying levels of severity. It can cause physical and intellectual development issues, and conditions such as scoliosis as well.

Jessalyn, who is enrolled in a special-education class, has slight speech difficulties and problems with her teeth.

The family had a health scare two years ago when doctors thought she would need brain surgery to treat her Chiari malformation, a structural defect in the base of the skull and cerebellum, the part of the brain that controls balance.

Luckily, Jessica said her daughter doesn’t have some of the common problems other children have, such as vascular issues.

Doctors still haven’t pinpointed which type of primordial dwarfism Jessalyn has.

“She’s tiny like the others, but she is on the taller end,” Jessica said.

Jessica said her daughter didn’t realize there was something different about her until her now 10-year-old brother was born, and he was taller than her by the time he was 3.

“I told her, ‘God made you special. You are just smaller than others,’” she said.

HIGH SCHOOL

Jessalyn is a little shy, but her personality shines when she is cheering on Liberty High School sports teams.

Although she is small in stature, she’s just as loud and energetic as her cheer mates.

“Jessalyn is a huge asset to our team,” said Gianna Pesce, cheer coach. “She brings joy to all of us. One thing that I love about Jessalyn is she doesn’t let her disorder define her.”

Taylor Howard, Jessalyn’s friend and cheer captain, described her as a “superstar.”

“She is always happy, and making everyone else happy,” she said.

Jessica said she has tried to instill in her daughter that she can do anything.

“Jessalyn always makes fun of me and says ‘You are always crying, mom!’” Jessica laughed. “When she went to high school, I bawled. When she went to tryouts and made the team, and when she got her uniform, I cried. It’s just amazing.”

One milestone was when she went to homecoming last fall. It was a moment doctors thought she would never see. Jessica was very emotional, watching her daughter get all dolled up, looking beautiful, going to the dance with her childhood friend.

Now, Jessalyn looks forward to her Sweet 16 birthday bash in August. TLC Bridal in Boardman is customizing a ball gown to make her feel like a princess.

Jessica said because children with the condition may never get to celebrate milestones such as getting married, she and Jessalyn’s father, Anthony Hartsfield, want to make this moment extra special.

Jessalyn initially was afraid to go to high school, but her special-education teacher, Kay Torres, helped her with the transition.

Torres said Jessalyn always wants to help her during class and just wants to be accepted, like everyone else.

“She is a joy. She is so sweet and so full of happiness,” Torres said. “She has goals and dreams, and she will go forth and get them.”

JESSALYN’S JOURNEY

The family’s journey started when Jessalyn had stopped growing in the womb, and pregnancy doctors couldn’t figure out why.

Doctors remained puzzled when Jessalyn was born seven weeks early, weighing 3 pounds.

Jessalyn wasn’t diagnosed until she was about 2, and it may have taken longer if Jessica hadn’t seen a talk show featuring a family of a child with primordial dwarfism. Finally, they had an idea of what Jessalyn was experiencing.

Jessica and Anthony took Jessalyn to the same Columbus doctor as the family on the talk show, where they got the diagnosis.

Despite the condition, Jessalyn never held back from trying new things, even as a child.

When she was younger, she played softball and played with other kids who were bigger than her.

“Nothing fazed her,” Jessica said, smiling.

Every year, Jessalyn and her family attend the Little People of Americaconference, hosted by Potentials Foundation nonprofit based in Illinois.

At the conferences, Jessalyn gets to reunite with friends who share her condition, and they enjoy group activities such as dance parties together. There are also medical workshops for families.

At last year’s conference, “It was great to see Jessalyn with her friends and their families, together forming bonds that can never be broken,” said Christy Jordan, Potentials Development president.

Potentials Development has 80 families registered nationwide who have at least one member of the family with the condition. The foundation supports research projects to diagnose and treat the condition and connects families.

“I have known Jessalyn since she was a very young girl. We have shared her successes and struggles with her parents,” Jordan said. “She has grown to be a beautiful, outgoing young lady. I love seeing the inclusion she has with her cheer team. She never lets her size stop her from her dreams.”

Jordan, who has children with primordial dwarfism, said they are just like anyone else, just smaller in size. The biggest concern is the unknown medical conditions that come with the diagnosis, she said.

SPREADING THE WORD

Someday, Jessalyn dreams of owning her own day care or a grooming business for small dogs.

Jessica hopes that by sharing her family’s story, it can help another family and give them hope their child can have a normal, happy life.

“I just want to put the word out there, and help someone like I was helped,” Jessica said. “I want to let everyone know she is small, but she is not different. She has feelings like me and you. I try to give her the best, normal life as anyone else in the world.”