As we wind down Lymphedema Awareness Month 2021, I wanted to spotlight a cause that is very near and dear to many of us in the lymphedema community because it impacts the children of our world. I’m talking about Brylan’s Feat Foundation and all of the wonderful work they do to support children fighting lymphedema in the United States and around the world with obtaining access to lymphedema supplies and even financial assistance for medical care appointments. They also spread incredible awareness on the fact that children are impacted by lymphedema too, which many people are astonished to learn sometimes.
Earlier this month I was able to interview Founder and Executive Director Brittany Williams. Thank you BFF for all of your amazing efforts!
What Inspired You to Create Brylan’s Feat Foundation?
Brylan’s Feat Foundation was an idea that I had shortly after my daughter, Brylan, was diagnosed with infant onset primary lymphedema in both of her legs and feet. At her one month appointment, we noticed some swelling on the top of her right foot and that led us down the rabbit hole of trying to figure out what was going on with our daughter. For the next 10 months, she saw several different doctors, had genetic testing, and did imaging, but were were still left without answers as to why this swelling was occurring. Through my own research, I thought we might be able to find answers at Boston Children’s Hospital. Brylan was finally diagnosed!
After leaving the appointment, my husband and I were confused because we had no family history and her genetic testing was all normal. We were basically told her case was a fluke and weren’t really given any guidance as to what was next. We were told a treatment plan wasn’t an option because she was only 11 months old. Using Brylan’s young age as a crutch didn’t really sit well with us and after researching more about lymphedema and seeing the devastating photos online, we knew we wanted to be proactive and make sure our daughter had the best chance of managing her disease. We searched for 6 weeks to find a therapist, most immediately denied speaking to me after I said her age. Once I found a therapist who was willing to take on Brylan’s case, we got fitted for garments and quickly learned how much of an uphill battle insurance coverage would be. All we wanted was to help our child, and it seemed like the system as a whole, did everything to delay or stop us. It was extremely frustrating, but with that frustration, came a desire to make a positive impact on the pediatric lymphedema community.
What Is the Mission of BFF?
I was surprised to learn that there wasn’t a dedicated organization or resource for children with lymphedema. The name and idea for Brylan’s Feat Foundation was always in the back of my mind for the next few years, but in May of 2018, it became a reality. BFF is the first and only nonprofit in the world specific to pediatric lymphedema. Our mission is to provide treatment to children in need, help raise awareness, and promote education of lymphedema.
What is Camp Watchme?
The organization strives to stay true to our slogan, “supporting children fighting lymphedema,” and with that, I joined forces with Betty Westbrook (@lymphedemapodcast) to create the first and only summer camp in the United States for pediatric lymphedema patients. Camp Watchme is FREE and is unique because each child can bring one parent/caregiver along with them.
The children get to have a quintessential summer camp experience, meet other children with the same disease and have designated CLT’s (certified lymphedema therapists) to help with treatment. The parents receive educational sessions, participate in support groups, learn about treatment options, and get a better understanding of the best way to help their child.
The first camp in 2019 was a great success with lots of community support from sponsors and well-known patient advocates; Amy Rivera (@thisisamyrivera), Veronica Seneriz (@lymphiestrong), and Cam Ayala (@camronayala). The summer of 2019 confirmed how much Camp Watchme is needed and we are excited to have expanded to two sessions for 2021.
2019 Camp Watchme Experience
Allow me to share what a powerful and life-altering experience I had in participating at the inaugural Camp Watchme in Oklahoma. First, it was an incredible honor for me to even be invited. One of the reasons why I initially created Lymphie Strong was to bring awareness to multigenerational primary lymphedema, so having the opportunity to work with children was very humbling. When we met the children the first day, everyone was very shy. Watching them transform and open up with smiles and laughter as we progressed through the week and did all of the activities was an unforgettable experience.
They say that photos are worth a 1,000 words. Here’s a gallery of CampWatchme 2019. All funds raised during the month of March will go directly to their summer camp for pediatric lymphedema patients, Camp Watchme for 2021. Please consider giving to this very worthy cause.
For more information on Brylan’s Feat Foundation and Camp Watchme, please visit brylansfeat.org