#MollysKids: Oaklyn Lowman update

“There is still no name for what she has,” said her mom, Amber Lowman. “Yet, we know something is going on.”
Oaklyn has a genetic disorder and something called a VSD, or ventricular septal defect, which...
Oaklyn has a genetic disorder and something called a VSD, or ventricular septal defect, which is a common heart defect.(Source: Family-submitted photo)
Published: Apr. 18, 2023 at 9:07 PM EDT
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CHARLOTTE, N.C. (WBTV) - You might remember the name from when we introduced her last December.

Oaklyn is a special girl from Dallas, who is living with uphill medical battle. That’s all I can tell you. She has no diagnosis.

“There is still no name for what she has,” said her mom, Amber Lowman, a loving single mom. “Yet, we know something is going on.”

Since December, Oaklyn’s mom says her daughter has seen a handful of even more specialists, including geneticists. These new specialists still didn’t find anything that helped with a diagnosis.

“Going to the geneticist is the most dreaded appointment,” Amber Lowman said. “To hear a doctor tell you everything that is ‘wrong’ with your daughter is discouraging. It literally sounds like to me that they’re saying, ‘Let’s start at her head and go to her toes. This ear is smaller and folded more. Her eyelid droops. She’s got Palmers creases. Her pinky curves to one side.’ So on, and so on. They look at so many characteristics, most which wouldn’t draw any attention.”

This past February, Oaklyn and her mom also traveled to the Shriner’s Hospital for Children in Greenville, S.C. While there, Oaklyn had a X-ray of her hips.

As some of you might remember from the first post, Oaklyn has been followed by Shriners since 2020. (If you aren’t familiar with the Shriners, they’re a great organization.)

“At first, we thought she had leg length differential but with the help of the Shriners actually learned her left hip socket is shallow,” Amber said. “The hope was as Oaklyn learned to walk, some curvature to the socket would develop. So far, that hasn’t happened. Her hip is constantly popping out. But, we return to Shriners in a few months. If there is no change, her case will be brought to a table of surgeons to discuss our options.”

Oaklyn returns to Shriners three days before her 5th birthday, this September.

That’s where you come in. Because Amber loves the Shriners and the Shriners love Oaklyn.

Amber has a request. The Shriners Hospital collects soda can pop tabs. They recycle them once a year to help with the expense of surgeries and medical needs. Amber is hoping to take a massive donation of pop tabs in September, in honor of Oaklyn’s birthday.

If you’d like to help Amber collect those soda can tabs, email me at molly.grantham@wbtv.com. Put “For Amber” in the subject line. I’ll forward your email directly to her and she can contact you and take it from there.

As for lack of a diagnosis, Amber said the not-knowing continues to be nerve-wracking.

“I’m nervous for her to go through yet another surgery,” she said. “But I also know Oaklyn is strong. She’ll overcome obstacles ahead. I mean, her hip problem would keep many kids sidelined. Not her. Although she’s a little wobbly, she scoots around as quickly as the typical toddler.”

Just last week Oaklyn went to Duke University Medical Center to see a different allergist and immunologist.

“We just want to get to the bottom of it,” Amber said. “He read over her medical history and thinks we have some sort of autoimmune disease/disorder. He ordered blood work to recheck her antibodies from her pneumococcal booster vaccine and contacted her ENT doctor to discuss a ciliary biopsy. That’s a test performed to help to diagnose or exclude certain conditions.

ENT said they will schedule the biopsy in the next few weeks. The results of that biopsy will determine Oaklyn’s next steps.

As mentioned in the first post, Oaklyn has a pup Reese, a specially-trained labradoodle who is training to start service dog and public access training. At this time she continues to train, though not yet completely certified yet.

“Oaklyn continues to smile and amaze us in every way,” Amber said. “She is getting taller—she’s now 35.5 inches—but still a low weight (24.3 pounds).” Love the photo, Oaklyn.

What a great idea about giving back to a hospital as a gift to them, on your birthday.

Again, to anyone interested, email me and I’ll send your note to Amber.