Germantown Hills girl doesn’t let rare disorder slow her downBy Holly Eaton for Chronicle Media — October 24, 2018
When Ashlynn Prather runs in cross country she smiles, for many reasons.
“I had to tell her to stop smiling while she runs, but she can’t help herself,” Ashlynn’s mom, Temesha Jones said. ”This summer, her older brother, Nathaniel, said, ‘You love running so much, why don’t you run for cross country?’ Now we know we couldn’t have picked a better sport, it’s like a family.”
Ashlynn, 12, of Germantown Hills has Noonan Syndrome, a rare genetic disorder that carries with it a Pandora’s Box of symptoms; congenital heart defects, blood clotting deficiencies, abnormal bruising, small stature, vision problems, connective tissue disorders.
If Ashlynn gets a cut, her skin tears, and she needs staples to close the wound. When her tonsils were removed, she almost required a blood transfusion. She has heart murmurs. For most of her young life, she has viewed the world through “coke bottle glasses.” It was only two years ago that she outgrew toddler-sized clothes.
Though Noonan Syndrome is genetic, doctors found no sign of it in either of Ashlynn’s parents. Temesha said specialists believe it may been trauma-induced as the result of a car accident that happened while she was pregnant.
“A girl came off the interstate and was texting. She hit me at 70 miles per hour,” she recalled . “She hit me so hard I went into oncoming traffic, the seatbelt cracked my breast bone and my pelvic bone.”
Later, Temesha’s pelvis broke from the weight of the baby, and she gave birth a week before her due date to what seemed to be a healthy baby girl. But within hours, Ashlynn’s weight began to drop dramatically.
Doctors first discovered a heart murmur, and, three months later, specialists diagnosed her with Noonan Syndrome.
“That’s when everything became a whirlwind. She had no platelets. Then they noticed her eyes weren’t focusing,” Temesha said. “It effects skeletal, and she didn’t start crawling until she was 2-and-a-half. She lost her two top baby teeth when she was 13-months-old, and her adult teeth didn’t come in until almost third grade, so she was behind on speech.”
Ashlynn’s form of blood clotting disorder is known as Von Willebrand’s Disease, and she must have a Stimate nasal spray always on hand, though she sometimes needs an IV.
“Other meds don’t work. She must have Stimate (used to control bleeding disorders) and OSF (St. Francis Medical Center) recognizes that. They keep it on hand as an intravenous and they have a plan in place for her,” she said. “If she were to fall, if she needs staples, we call Dr. Paquette’s office.”
Pediatrician Dr. Troy Pequette is among three of Ashlynn’s doctors who the family have become quite close to over the years, along with pediatric cardiologist Dr. Ty Hasselman and Dr. Michael Tarantino, founder and president of the Bleeding & Clotting Disorders Institute on Lindbergh Drive in Peoria.
“Dr. T knows what she needs, that she has to have Stimate. He’s been her doctor since she’s been 2 years old,” Temesha said. “When we go to the hospital or have an appointment, he’s knocking on the door, saying, ‘How’s my baby patient today?’ ”
Two years ago, doctors found another heart murmur; terrible news, Temesha said, because Ashlynn was born with pulmonary stenosis, a serious form of heart murmur that directly affects her lungs, causing serious health risks.
The last thing she needed was another heart murmur. The diagnosis, however, was a bit of a miracle in disguise.
“The doctor said he’d never seen this happen before, but the new heart murmur caused relief to the one she was born with and it wasn’t causing as much stress,” Temesha explained. “They equaled each other out and he said we might see a growth spurt.”
Ashlynn was 10, then, and by her 12th birthday, she’d gained 10 pounds, her shoe size had grown by two sizes, and her pants, which once dragged on the floor as she walked, “looked like capri pants.”
Her eyes grew, as well, and she is no longer considered legally blind.
Still, Ashlynn will always be quite a bit smaller than the average person, and Temesha has declined offers for aggressive steroid treatments.
“The growth steroids, they’re two years of forced growth … just to be a little taller?” For Temesha, the treatment is clearly not an option she’ll consider. “No. They can cause fatty liver and liver cancer, and she just says, ‘I’m going to be Mommy’s little girl forever.’ ”
Not just Mommy’s little girl. Ashlynn is adored by her older sister and four older brothers, and they inspire her, as well, Temesha said. William, 30, is stationed in Japan with the Navy. Matthew, 26, is an Army biochemical warfare engineer.
Isaiah, 21, graduated Oct. 19 as an Air Force Basic Military Training Honor Graduate and Nathaniel, 18, was recently sworn into the Navy. Her sister, Cera, 16, wrestles against girls and boys for the Metamora Township High School wrestling team.
“Oh, she understands what a veteran is, that’s how she started running, at a veteran’s goodwill walk and run at Peoria Riverplex,” Temesha said. “She was missing her brother William a lot and wanted to go, and when we got about a third of the way around, she started running and she ran the whole thing. She never slowed down.”
It’s been difficult for Ashlynn, her mother said, feeling different from the other kids at school, often misunderstood by having a rare disorder that most have never heard of. In cross country, though, there’s an even playing ground.
Everyone starts at the same place, runs the same distance and tries the best they can to beat their own best time. Ashlynn has jogged her way into a group of kids who see her as an equal and accept her for who she is.
She’s grown enough that there are girls at the regional meets who are smaller than her, at least, for now. But she won’t be hard to miss. She’ll be the girl who’s smiling as she runs.
— Germantown Hills girl doesn’t let rare disorder slow her down —-