Maddie Jo

Maddie Jo Doesn’t Let Lymphedema Hold Her Back 

No one could explain why Maddie Jo’s ankle was so swollen.  

“I was at dance class and it started swelling out of nowhere,” Maddie Jo said.  

By the time her mom, Jamie, picked her up from the class, the swelling had progressed all the way up her calf. Maddie Jo and Jamie went to their local doctor in Emerson, AR, then their local children’s hospital, but no one could explain it. Nothing was broken or sprained. It didn’t hurt. The doctors initially told Maddie Jo and Jaime to wait and see if it got worse.  

It did — the swelling spread up her entire leg, then to the point where she couldn’t get a shoe on her foot.  

“We were finally referred to a pediatric cardiologist in Shreveport, LA, and he was the first one who said ‘lymphedema,’” Jaime said. “That doctor made sure there was nothing wrong with her heart and then connected us with the closest team who had experience treating this in children — at Children’s Health℠ in Dallas, four hours from where we live.”  

Comprehensive treatment for a relentless disease 

Jaime had heard of lymphedema but had no idea it could affect a 6-year-old. She had only heard of it affecting people like cancer survivors whose lymphatic system (which helps keep fluid from building up in the body) wasn’t working properly because of cancer treatment. She soon learned that Maddie Jo was the one in around 100,000 people who developed primary lymphedema, a genetic disorder which causes the same buildup of fluid.  

Maddie Jo took this diagnosis in stride. A bubbly, outgoing kid, she kept a positive attitude and simply told her mom “okay, what’s next?” after each appointment.  

But Jamie feared the worst as she learned about the many ways this might impact Maddie Jo’s life: It could limit her mobility. She would have a high risk of serious infection from just a scrape or bug bite. They were grateful to meet Elizabeth Tong, one of the few certified lymphedema therapists (CLT) with expertise in treating children in the region. 

“She validated how I was feeling and told me that we control lymphedema — lymphedema doesn’t control us,” Jamie said. “If it wasn't for her putting that into my head at the beginning of this journey, I think Maddie Jo and I would have a very different outlook.” 

Still, managing lymphedema isn’t easy. It’s a lifelong disease with no cure. Maddie Jo needs an involved treatment called manual lymphatic drainage, where Elizabeth massages her leg in certain patterns to move the fluid through her leg. She also needs special bandaging and to keep pressure on her leg to reduce swelling 24/7.  

“Sometimes my leg feels heavy, but mostly it's okay,” Maddie Jo said. “Miss Elizabeth helps me feel better by massaging and helps the fluid go up instead of down, because it would get worse if the fluid went down.”  

Since her diagnosis, Maddie Jo and Jaime have traveled to Dallas one week out of every month so she can get this treatment from Elizabeth. They also do daily treatments at home.  

“There’s no pill, no surgery, no easy solution,” Jaime said. “We can’t skip treatment for a day and pick it back up tomorrow because even with just 24 hours it can go into havoc. If it weren’t for Children’s Health I don’t know where we would be right now.” 

Maddie Jo Rising 

Lymphedema is always part of Maddie Jo’s life, but she doesn’t let it hold her back. She loves science and Barbies and making homemade ice cream. She might be an actress when she grows up — or maybe a singer, or a mermaid.  

“Or maybe definitely a librarian or a teacher. Or maybe that’ll just be my hobby. I’m not sure yet but I’ve still got some time to figure it out,” Maddie Jo said.  

Jamie describes Maddie Jo as sunlight. She brings out the best in everyone around her. Jamie feared that this condition would impact Maddie Jo’s mental health because it’s something everyone can see — one leg is noticeably larger than the other and she always has to wear compression bandages.  

“I’m sure it does impact her mental health to a degree, but she has just been so positive and resilient from the beginning,” Jamie said. “If someone stares at her for too long, she just immediately starts educating them and doesn’t give them the chance to make her feel bad. She’ll often say ‘some people have to wear glasses for their eyes, and I have to wear this for my leg.’” 

Maddie Jo’s favorite part about coming to Children’s Health is going to Seacrest Studios, a multimedia center within the hospital that gives patients a chance to explore radio, television and new media. She even received a video message from American Idol host Ryan Seacrest and judges Blake Shelton, Katie Perry and Lionel Ritchie inviting her to try out for the singing competition when she’s 15.  

“She’s a headstrong kid, she’ll hold them to it,” Jamie laughs.  

Maddie Jo and Jamie have also started a nonprofit called Jo Rising to support children with lymphedema. One of their goals is to help them find shoes that fit. This comes from one of Maddie Jo’s daily challenges with lymphedema. They currently have to buy two pairs of the same shoes in different sizes so she can have a matching pair. They also hope to raise awareness about the disease and support research to advance lymphedema care.  

“My prayers are that in 20, 30 years, there will be some kind of cure. The science isn’t there yet, but I hope that in her lifetime, there will be,” Jamie said.  

“I want more people to know what lymphedema is so they stop saying ‘hey what happened to your leg,’” Maddie Jo said. “And I want to share my story to help make people feel better.”  

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