Olivia Broyles

Decatur, Georgia (Senate District 42)

When you meet eleven-year-old Olivia Broyles, the first thing you notice is her piercing blue eyes. Her eyes follow people as they speak and move about, taking it all in. Olivia can no longer walk or talk, or even move her arms and legs; she uses a wheelchair. Olivia has Metachromatic Leukodystrophy (MLD), a rare and progressive genetic disorder caused by the deficiency of an enzyme critical to the nervous system. Before 2017, when she was diagnosed with MLD, Olivia behaved like a typical little girl. She played soccer, sang, acted on stage, and loved to make up silly words and stories. Over the past six years, Olivia’s family has watched their child lose these capabilities in agonizingly slow motion. Their continuous love for her is beautiful to witness.

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On a beautiful and sunny Wednesday in late November, Olivia sits in her wheelchair being fed lunch by her grandmother. Nearby, Mia, the family’s service dog, adoringly watches. While Olivia has a feeding tube to provide nutrition, she can still eat for enjoyment. On Wednesdays, Olivia does not attend school. Instead, she has physical therapy and speech therapy appointments in her home. Olivia’s grandmother reads aloud to her from a book recommended by Olivia’s college-age cousin, Katherine. 

While Olivia is finishing lunch, her father, David, shares a bit about what life is like for the Broyles family. He is careful to delve into details out of earshot from Olivia. Up until her diagnosis on March 25, 2017 (when she was 6 years old),Olivia appeared to be developing as a neurotypical child. David recalls that she played soccer, sang and acted on stage, and loved to make up silly words and stories. David recalls one particular and telling incident when Olivia could suddenly no longer put on her shoes to go to school, prompting him and his wife, Yvonne, to seek answers from doctors. 

The process of medical and neurological tests in order to obtain a diagnosis can be challenging and is often exacerbated in cases of rare diseases such as MLD. Early on, one doctor offered up the probable diagnosis of MLD, but cautioned David and Yvonne: “Don’t Google it.” David explained that most neurologists simply don’t have experience with such a rare disease.  Eventually, the Broyles connected with Dean and Teryn Suhr of the MLD Foundation whose own children were diagnosed with MLD. They put the family in touch with Dr. Wenger of the  Lysosomal Diseases Laboratory at Thomas Jefferson University, who confirmed the MLD diagnosis with blood and urine tests. David and Yvonne then took Olivia to see Dr. Maria Escolar in Pittsburgh’s program for the study of Neurodevelopment in Rare Disorders (NDRD).Dr. Escolar provided a bone marrow transplant to slow the disease’s progression; Olivia spent several months in the hospital.

In the early months after diagnosis, Olivia still played on the monkey bars, which now remain untouched in her backyard. “MLD is a slow process of losing everything,” explains David. “Over time, you watch her just slowly lose capabilities.” As time passed, he and Yvonne watched as their daughter lost the ability to speak, walk, sit up, and swallow. “It will all eventually go away, but it happens so slowly,” said David. “It's way worse than a car accident.  You could pick almost anything, and there’d be a better outcome.”

Because she is a minor, Olivia has Katie Beckett Medicaid to help cover her medical bills. The application process is complicated and expensive. A family member helped defray the cost of the extensive neurological evaluation. “Everything is just hard, and there is red tape everywhere,” David says, adding, “It’s a lot to deal with if you’re also dealing with the fact that your child is sick.” The entire process needs to be renewed every few years, but the Broyles hope the renewals will not be as challenging.

While Olivia was still able to walk, she had eleven therapy sessions a week, including five or more physical therapy sessions. The Broyles also welcomed Mia, a service dog and Olivia’s Make-a-Wish request, to their family to help stabilize Olivia while she still walked. Now, Mia is dubbed a “circus dog” because she primarily provides entertainment for Olivia. “When we got her, she had time to be useful to Olivia in ways that no longer make sense,” David explains. The family has cut back on speech therapy sessions, too. “We could tell it was hard for her to speak. It was sad,” David shares. “It is not hard for her to think of the words, but the tongue stops working properly.” At school, Olivia receives speech therapy, occupational therapy, and physical therapy multiple times a week. The Broyles love the school and teachers. Olivia is paired with neurotypical students and even hangs out with a friend on Thursday afternoons. “She is hugely popular,” David says proudly. “When I am around the school with her everyone knows her by name and says hello.”

Each afternoon afterschool, Yvonne picks Olivia up and brings her back to the house. Then, Olivia gets to watch her favorite TV shows, Puss N Boots, The Octonauts, The Electric Company, or movies on her iPad. Since she can’t use her voice to select a movie, David has made a page on Olivia’s eye-gazedevice which has over 60 movies with movie thumbnails. Olivia can choose the movie she wants to watch by looking at it. David wishes Olivia had latched onto the Windows-based device while she still had more functionality because, prior to that, she only had iPad experience. Unfortunately, insurance did not cover the very costly Apple version for iPad. The family has gone through a multitude of movies but every once in a while, David or Yvonne will remember one they’d forgotten. “We forgot about Jumanji, and that was great,” he offers.

When Olivia is watching something she enjoys–like old videos of herself when she could walk and talk, or funny ones her cousin Katherine sends her–her huge eyes light up, and she laughs a loud, contagious laugh. David plays a video of Olivia walking on the beach, and her eyes fixate on the screen as she laughs. When she was younger, Olivia had imaginary friends with unique names. She named one of these ‘friends,’ Rosie. At the mere mention of Rosie, Olivia instantly smiles.

Being outside is another fun activity for Olivia. On weekends, David holds her on his lap while he mows the lawn, or has her wheelchair outside while he is building in the backyard. “I think she’s interested in what I’m doing, he explains.” The family has a giant swing in their backyard on which Olivia can be placed. David pushes her and then lies on it next to her. Olivia’s eyes follow her father, and she smiles. In the background, closer to the house, Mia lies outside sunbathing, protecting her family.

Writer: Rachel Wallenstein Photographer: Sydney Foster