Story of Healing

Davynee Bearden

Jackson Parish

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"They know who we are. They remember us. That is something that is important to me. I know they see so many patients, and so many kids and parents, but they still know exactly who we are! So, it’s very personalized.  "

After Davynee Bearden was born, her mom, Stephanie, kept a close eye on her development. Many of Davynee’s family members on her father’s side had muscular dystrophy (MD), a group of diseases that cause progressive weakness and loss of muscle mass, including her own father.  

 

Around three years-old, Stephanie saw Davynee walking in flip-flops and couldn’t help but notice that she walked exactly like her aunt, who also has MD. “I was just on the lookout for it,” said Stephanie. “We already had one daughter, and she’s fine. I just kind of kept a look out and was pretty sure that’s what that is.”  

 

Stephanie decided to take Davynee to a neurologist in nearby Monroe. The local neurologist assessed her and ordered a blood test specifically for Charcot-Marie-Tooth disease type 1A (CMT1A), a type of inherited neurological disorder that affects the peripheral nerves. Davynee’s results came back positive, with an identical diagnosis to her father: CMT1A and MD.  

 

Following the news of her diagnosis, Davynee had many neurology appointments in Monroe to create her care plan. Stephanie felt that the care plan in Monroe was not proactive enough for her daughter. Instead of providing the family with a handicap decal, so Davynee didn’t need to walk unnecessarily far distances, her care team wanted to put braces on her legs and place her in a wheelchair.  

 

Davynee’s mom felt this was absolutely not an option. She knew her daughter could overcome with the proper care team. She reached out to Davynee’s pediatrician, who gave the family the option of a neurologist in Shreveport or New Orleans. Although it was a significantly longer drive from Monroe, Stephanie knew the best care possible for her child was at Children’s Hospital New Orleans. 

 

Once at Children’s Hospital New Orleans, Dr. Joseph Gonzales, a pediatric orthopedic surgeon, and Dr. Joaquin Wong, a pediatric neurologist, realized that Davynee also had scoliosis. As they decided on the care plan, Stephanie noticed the drastic difference in approach of the doctors at Children’s Hospital.  

 

Unlike in Monroe, they made sure she was doing physical therapy and staying active rather than being placed in a wheelchair. Instead of leg braces, they switched to customized inserts for her shoes. This allowed Davynee to look like a normal kid from the outside, gain strength to play like a kid again, and gave her the confidence she needed as she got older.  

 

Stephanie felt very strongly that Davynee would not live on pain medicine. She decided to give CBD oils a try with the support of Davynee’s doctors. “As soon as she started taking them, she was able to ride her bike,” recalled Stephanie. “She did not complain of pain at all.” That is when Stephanie realized, “Holy mess, it’s working!” 

 

Because of Stephanie’s familiarity with MD, she recalls being more scared by the scoliosis diagnosis filled with unknowns. The doctors had to keep a close watch on her scoliosis as she grew to make sure she would not need surgery to correct her spinal curve.  

 

“The MD aspect of it, I was like okay. I know what to do. I know how to keep her active. I know she can still be independent. I am not going to enable her to be wheelchair bound. In that aspect of it, I was determined to make sure she lived as normal as possible. I wanted to make sure she was not hindered.”  

 

Davynee is the athlete of the family. She plays softball and basketball and likes swimming and riding horses. She always pushes through and keeps herself motivated. Her spinal curve degrees are still low and there are no alerts at the moment for surgery.  

 

For the past few years, Davynee has come back to Children’s Hospital every six months to check on her MD and scoliosis. Davynee looks forward to her hospital visits and loves to goof off with her care team. At her most recent appointment this summer, the doctors decided she is doing so well she only needs to be checked every nine months.  

 

“They know who we are. They remember us. That is something that is important to me. I know they see so many patients, and so many kids and parents, but they still know exactly who we are! So, it’s very personalized,” said Stephanie.  

 

The Bearden family still feels that the drive is worth it for the level of care provided at Children’s Hospital New Orleans. Because of the proactive care in New Orleans, Davynee can now play like a kid and not be held back because of her illness or doctors.  

  

Learn more about Neurology and Orthopedic care here at Children’s Hospital New Orleans.