Pediatric Lymphedema – The Story Behind Brylan’s Feat Foundation

I heard Brittany Williams speaking at the National Lymphedema Network’s 2019 conference in Boston. Brittany’s daughter Brylan was born with primary lymphedema, and Brittany’s speech covered the story of her family’s journey to seek proper diagnosis and get appropriate treatment for her daughter Brylan.

During the course of Brittany’s journey she became aware of many heart breaking stories from other parents who had children affected by lymphedema; she decided then that she wanted to help and assist in providing necessary treatment to pediatric lymphedema patients who are in financial need, and help raise awareness of this disease. In May of 2018 Brittany launched Brylan’s Feat Foundation, a non-profit organization dedicated to serve as a resource and advocate for children and their families who have been impacted by lymphedema.

I was so impressed by Brittany’s determination to create a positive impact on the pediatric lymphedema community that I asked her to write down her story, which I am proud to share with you –

Here it is:

My name is Brittany Williams and I am a wife, mother of four, and lymphedema advocate. My relationship with lymphedema unknowingly started when I was pregnant with my only daughter, Brylan. At her one month check-up, there was concern for swelling on the top part of her foot. Her pediatrician did not know why this was occurring and gave me two options. He said, “we can wait and see what happens or we can take action.” Needless to say, we had genetic testing within a few days because when it comes to any of my children, I try to be proactive, especially when it comes to their health.

Brylan’s legs when she was first diagnosed (13 months old)

Over a 10 month period, Brylan experienced several tests and countless examinations by more than 8 different doctors all while I continued my own research. I was amazed by how difficult it was to find answers and I started to feel defeated, helpless and like I was failing as her mother and her protector. But when Brylan was 11 months old, we flew across the country to Boston Children’s Hospital to finally receive a diagnosis of infant onset primary lymphedema. After hearing her diagnosis, the only thing I could think about was how do I fix this? I’m her mom and that’s my job, to make things better.

My husband and I took a few days to process her diagnosis. And of course, we did what most people do when faced with new medical information, we turned to the trusty and always factual, google. We were both fully aware of what a bad idea this was, but we couldn’t help ourselves. After looking at all the devastating photos, we quickly realized that we needed to push forward and figure out the best way to help our daughter.

Because Brylan was so young at the time, we were advised to buy her tight socks and to wait until she was a little older to start an actual treatment plan. As I mentioned, I like to be proactive so using her young age as a crutch wasn’t a plan I was okay with.

I completely immersed myself into the lymphedema community and desperately searched for patients and other parents to speak with. I began calling therapists to try and get Brylan fitted for compression garments. This proved to be a big uphill battle as no therapist wanted to take on a case of such a young patient. I continuously heard, “sorry we don’t deal with children.” To add to my frustration, it seemed like our insurance company tried everything in their power to delay the process even further. Finally after six weeks of continuous phone calls and emails, I found a therapist and our insurance approved the garments, although with the small amount of help from insurance, Brylan’s first set of garments cost a little over $400. A few months had gone by and Brylan’s swelling didn’t seem to be getting any better. She wore her garments daily, but I wasn’t seeing the results I wanted.

Once again, I listened to my mommy instincts and took her to her therapist to show me how to wrap Brylan properly. Her new routine consisted of customized daily garments and short stretch bandages at night. This routine also included a 20 month old kicking and screaming while I wiped away my own tears so I could see what I was doing. It was honestly one of the hardest things I have done as a parent, but after a few short weeks, we began to notice a significant difference.  Her right leg, which was diagnosed as moderate, started to look the same size as her left leg, which was diagnosed as mild.

Brylan and Brittany

Since then, we have done our best to stick with Brylan’s treatment plan. Incorporating Brylan’s treatment plan earlier in her life has made things much easier as she has gotten older. Brylan who is now 6, sees her compression treatment as part of her normal routine. Of course she has her rebellious moments and there are tough days where my husband and I want to take a break, but what kind of example would I be setting if I didn’t help her stay compliant? In those moments, I try to remind myself that as her parent, I am her strongest support system and I am the one she looks to for guidance. Yes, it is more work for the parent or caregiver, but who ever said being a parent was easy? The benefits of seeing my child as healthy as she can be and able to run around with her brothers, play sports, and just be a kid is worth every hard day.

Since becoming a part of the lymphedema community, I continued to hear heart breaking stories from parents about the financial hardships to provide treatment to their children. Learning of the struggles of other children suffering from the same disease as my daughter, made me realize that I wanted to help. I wanted to give those children same opportunity as Brylan, the opportunity to fight their disease. My intention was to create a positive impact on the pediatric lymphedema community because I was frustrated with the outrageous treatment costs, the insurance battles, the lack of education of lymphedema in medical professionals, and the lack of overall awareness.

With the launch of Brylan’s Feat Foundation in May of 2018, there is finally a resource for families affected by pediatric lymphedema to turn to. We are the first and only organization specific to supporting children fighting lymphedema. Our mission is to assist in providing necessary lymphedema treatment to children who are in financial need, help raise awareness, and provide education of this disease.

Brylan’s Feat Foundation has expanded our efforts of supporting children fighting lymphedema by hosting the first and only summer camp in the United States, Camp Watchme. We will be hosting Camp Watchme for the second year in July of 2020.

As a community, I hope that we all strive to put our best feat forward. To learn more about Brylan’s Feat Foundation and support children fighting lymphedema, please visit www.brylansfeat.org and follow us on Facebook and Instagram @brylansfeatfoundaiton.

Brittany Williams

Founder/Executive Director of Brylan’s Feat Foundation

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