4-year-old Oaklyn spreads joy despite no diagnosis for medical condition
In her first four months of life, the little girl saw multiple doctors and specialists and was hospitalized three different times.
GASTON COUNTY, N.C. (WBTV) - Oaklyn Lowman is a 4-year-old in Dallas, N.C.
Her single mom, Amber, wrote a beautiful email after Oakyln’s maternal grandfather reached out. He wanted us to know about his special granddaughter who, “spreads joy to everyone.”
“She is a little fireball who loves aggressively but knows just how to make your day when you need it most,” Amber said. “Our family would love her to be one of these amazing #MollysKids. She was born four weeks early, and from day one was a fighter. She spent no time in NICU, but has since had a journey that’s really educational because not everything has a diagnosis. We don’t know what Oaklyn ‘has.’ There is no name for her issues. Doctors can’t classify any one thing. Yet, we know something is going on.”
Amber says early on, doctors noticed a few genetic markers that indicated Oaklyn had a genetic disorder and something called a VSD, or ventricular septal defect, which is a common heart defect.
In her first four months of life, the little girl saw multiple doctors and specialists and was hospitalized three different times, one of which was surgery to get a g-tube. No one could say exactly what was going on.
“We knew a few things though,” Amber said. “We knew we needed her to gain weight. We also knew she needed to get into therapies to help with development. We got her into three different types. She kept going, all while smiling. She smiled then and still smiles now, to everyone.”
Amber says over the years, Oaklyn continued to see more specialists, but also continued to grow and learn at her own pace.
“I was told she would never walk unassisted because of her tethered spinal cord and a cyst on her spinal cord,” Amber said. “But today she walks, runs, and climbs. She has overcome many medical odds.”
Yet, her diagnosis is still unknown.
“We traveled to Durham to take part in a research program called the undiagnosed disease network,” Amber said. “Oaklyn was seen - again - by an array of specialists. She had tons of blood drawn, X-rays, scans, all of it. Two years later, nothing. It’s still just an ongoing research program.”
The main issue with no diagnosis is that Oaklyn and her mom live in the unknown.
“We don’t have a blueprint,” Amber said. “No plan. We don’t know what she will face or what to prepare for as she grows. She remains nonverbal, yet knows how to get her point across. She knows a few signs. She thinks ‘please’ will get her anything she wants. She has a 6-year-old sister, Aspen, who is her world and when Aspen isn’t home, Oaklyn takes notice.”
The most recent addition to the family is Oaklyn’s new puppy Reese, a specially-trained Labradoodle.
Reese’s main purpose is to help Oaklyn with anxiety. Like many children who are poked and prodded their whole lives for medical reasons, Oaklyn developed a fear of doctors. When her mom pulls into a parking lot, Oaklyn starts using sign language to say, “All done.”
“I can’t even get her out of the car most times without her completely losing it and starting to scream,” Amber says. “Specialists will ask what helps calm her. Songs? Candy? If they don’t look at her? Nothing helps. The fear inside my daughter of needles being pushed into her arm to get blood has traumatized her. She no longer can get routine care without having to be sedated.”
Despite all this, Oaklyn spreads joy. Her mom says she loves group hugs, has that never-ending smile, and is now in preschool despite her limitations.
So many children in our area with so many uphill battles, not all even having a name. Welcome to #MollysKids, Oaklyn. We will be waiting to get updates from your mom, and hopefully answers she finds on your behalf.
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