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Jessalyn Hartsfield faces challenge of rare conditi9on
Rare condition means girl is short in stature, but she and her family are ...
LIBERTY
On the surface, Jessalyn Hartsfield would appear to be like any happy, high-strung child who is full of energy and loves to laugh.
Jessalyn, however, is not as young as many would suspect.
The 8-year-old girl suffers from a rare condition known as primordial dwarfism — making her no taller than her 3-year-old brother. She is expected to get no taller than 3 feet and may have a decreased life expectancy.
Primordial dwarfism can best be described as a condition where an individual is extremely short in stature, but unlike other forms of dwarfism, completely proportionate. Those with the condition appear to be much younger than they actually are.
Jessica Rivera, Jessalyn’s mother, said Jessalyn, like many girls her age, likes baby dolls, dancing and participating in Girl Scout activities. She said Jessalyn had been a cheerleader but gave that up because some of the other girls were treating her like a baby.
“A lot of kids want to hold her like a doll, but she is not a doll, and she doesn’t like that,” she said. “She doesn’t like when other kids try to baby her.”
Rivera said adults can be equally insensitive. She said it is not uncommon to hear comments on her child’s size or get questions about her age when walking through the grocery store or anywhere in public.
“A lot of people really don’t know about this, so they need to be told so that they can understand what it is,” the township woman said.
The condition poses challenges other than stares. Jessalyn uses step stools to perform basic daily tasks such as brushing her teeth or washing her hands and has a modified desk in school along with a car seat she must still use on her school bus for special-needs children.
Rivera said her daughter and others with primordial dwarfism also face myriad health issues, including joint and speech problems, learning delays and brain aneurysms.
Anthony Hartsfield, Jessalyn’s father, said his daughter’s condition means she likely will live at home with her parents the rest of her life.
Bob Walker is president of the Potentials Foundation, a help organization for those with primordial dwarfism and headquartered in Centennial Colo. He said Jessalyn is one of only three people with the condition in Ohio whom the organization is aware of.
The organization also lists only 67 families in North America with a member having primordial dwarfism.
Jessalyn and her parents attend meetings via phone with Potentials Foundation and travel to meet with other families in the group twice a year.
Rivera said she also wants to make the public aware of her daughter’s condition just in case there are other unidentified area families dealing with the same issues and may not know what the problem is.
Rivera and Hartsfield did not know anything about primordial dwarfism when Jessalyn was born seven weeks premature and weighing only about 3 pounds.
The new parents knew something was different about their baby girl, but did not know what it was and could not quickly find anyone to diagnose the condition.
Jessalyn, Rivera said, was diagnosed at first with another condition that did not quite fit her physical symptoms, so Rivera began doing her own research. She ultimately learned of the condition by watching someone with primordial dwarfism on a talk show. Jessalyn was diagnosed a short time later when she was 2 years old.