My name is Brittany Williams. 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 checkup, 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.
Over a 10-month period, Brylan experienced several tests and countless examinations by more than eight 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 to Boston Children’s Hospital and finally received a diagnosis of infant onset primary lymphedema. After hearing her diagnosis, the only thing I could think about was how to fix this. I’m her mom and my job is to make things better.
My husband and I took a few days to process her diagnosis. 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 I was not okay with using her young age as a crutch.
I completely immersed myself into the lymphedema community and desperately searched for patients and other parents. 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. With the small amount of help from insurance, Brylan’s first set of garments cost a little more than $400. A few months went 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, did some research, and asked the 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.
Since then, we have done our best to stick with Brylan’s treatment plan. Incorporating this routine earlier in her life has made things much easier as she has gotten older. Brylan, who is almost 7, sees her compression treatment as part of her normal daily life. She still has her rebellious moments, and there are tough days when 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 heartbreaking 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 the 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 2018, families affected by pediatric lymphedema have a resource for help. We are the first and only nonprofit specific to pediatric 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 providing for pediatric lymphedema patients and their families by creating the first and only summer camp in the United States, Camp Watchme. This unique camp is FREE to one child and one parent/caregiver. Camp Watchme provides the opportunity for children to have the quintessential summer camp experience, meet other children fighting the same disease, and receive hands-on treatment by volunteer Certified Lymphedema Therapists.The parents get to engage in support groups, educational sessions, learn about different treatment/products, and overall, receive a better understanding of the best way to help their child.
We are thankful to have the support of Juzo, whose family values and dedication to creating “freedom in motion” for their lymphedema patients align so well with Brylan’s Feat Foundation. As a Diamond Sponsor for Camp Watchme 2021, Juzo, along with our other sponsors, has allowed our organization to offer this life changing experience to more lymphedema warriors by hosting two sessions next June (2021) in Winter Park, Co.
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, visit www.brylansfeat.org and follow us on Facebook and Instagram, @brylansfeatfoundaiton.
People born with lymphedema have primary lymphedema – most common in children. Treatment is the similar to other lymphedema treatments, which includes Complete Decongestive Therapy, but is customized to your child’s needs. Learn more about medical compression therapy and its benefits.
Be sure to follow us on Instagram, @JuzoCompression, and Facebook to learn more about Juzo USA products, programs and our lymphedema community.