In the summer of 2023, while undergoing a round of complete decongestive therapy at my lymphedema clinic, I had a shocking exchange with a physician assistant.
It started out innocent enough, with her asking what I had gotten up to so far that summer. “I just got back from Colorado,” I replied. “I volunteer at a camp there for pediatric lymphedema patients.”
“Wait,” she said, pausing from unwinding the bandages around my leg. “I had no idea kids could have lymphedema!”
I nearly rolled right off the examination table.
“Oh yes, they do,” I said, once I found my words. “I was one of them.”
I went on to tell her about Camp Watchme, the first and only summer camp in the United States for children with lymphedema. I described the way the campers excitedly compare their colorful compression garments, and how they scramble up rock walls and jungle gyms while bandaged. I pulled out my phone and swiped through pictures: Here’s Ally, wrapping her leg by herself. Here’s Cora, picking flowers. Here’s Reid and Julian, mock-sword-fighting with sticks.
“I had no idea,” she said again, as she resumed her work on my leg.
Sometimes we in the lymphedema community think we’ve come so far with lymphedema awareness until interactions like this happen — in a clinic, no less — and it shows how important it is to keep pushing. Not just for us, but for the kids living without acknowledgment or treatment for their condition.
After my appointment, I spoke with the clinical lead about this gap in knowledge around pediatric patients. But the entire exchange, although brief, stuck with me: If someone working in a clinic treating lymphedema patients has no idea that children are affected, what hope is there for these kids and their families?
We can be that hope.
That’s why I’m reaching out to you both as a three-time volunteer at Camp Watchme and a former lymphie kid to ask for your help in supporting Brylan’s Feat Foundation, the first and only nonprofit in the world specific to pediatric lymphedema.
Brylan’s Feat Foundation
Much like the Lymphedema Treatment Act and its founder Heather Ferguson, Brylan’s Feat Foundation (BFF) was also borne from a mother’s determination. Brittany Williams established the foundation after navigating the complicated journey from lymphedema diagnosis to treatment for her daughter, Brylan.
Williams experienced firsthand the challenges that come with pediatric lymphedema, and the more she immersed herself in the community, the more she realized how inaccessible treatment is for many families, often due to lack of insurance coverage or awareness among healthcare providers.
When left untreated, kids with lymphedema are more susceptible to recurrent and life-threatening infections, psychological issues, skin complications, orthopedic problems, and eventual disability — just like adults with lymphedema.
In effort to combat that, Williams founded the nonprofit organization dedicated to providing necessary treatment to pediatric lymphedema patients around the world and to help raise awareness and promote education of this disease; she later co-founded the Pediatric Lymphedema Alliance alongside Betty Westbrook as a resource for medical professionals and caregivers.
Not only does BFF offer financial assistance and access to custom garments, bandaging supplies, pneumatic compression pumps, emotional support, and virtual therapy sessions, but they also started the only summer camp in the United States for children with lymphedema: Camp Watchme.
Camp Watchme
One of BFF’s initiatives is Camp Watchme, so named after the response one should give if ever told they can’t do something because of their lymphedema (“Oh yeah? Watch me!”).
While at camp, the kids and their families learn more about lymphedema, receive one-on-one treatment from certified lymphedema therapists, and — most importantly — get to just be kids.
No one’s asking them what they’re wearing on their leg, or why their arm looks different. Instead, they’re among pals, comparing their compression garments and marveling over each other’s bandage wrapping skills. They also get the opportunity to do activities like hiking, swimming, archery, rock climbing, and painting ceramics. It’s pure lymphie magic!
But it’s not all fun and games at camp: The schedule is packed with educational sessions tailored for the children and their caregivers on topics ranging from compression, bandaging, and fibrosis to more complex topics like genital lymphedema, medical trauma, and advanced manual lymphatic drainage.
Each camper and their family is assigned a certified lymphedema therapist who works with them one-on-one throughout their time at camp, performing manual lymphatic drainage on them in the mornings and evenings as well as wrapping them at night.
Adult lymphedema patients also volunteer to serve as mentors to the kids and offer their own unique perspectives and lessons learned to the families, giving them an idea of what to expect as they navigate life with lymphedema.
Camp is, without a doubt, one of the highlights of my year. It’s so healing to my own inner lymphie kid to know these children are being empowered early on in how to take care of themselves and their lymphedema — and that their families are, too.
Love for Lymphedema Fundraiser
Please join me in supporting Brylan’s Feat Foundation and their sixth annual Love for Lymphedema virtual fundraiser. Between now and October 28, 2024, you can donate through my team link, Team Lymphie Life.
Donations of $50, $100, $250, or $500+ will automatically be entered into a raffle for prizes. Most importantly, your donation will help Brylan’s Feat serve pediatric lymphedema patients in over thirty countries around the world. Any amount helps!
How to Donate
- Go to https://www.brylansfeat.org/loveforlymphedema
- Scroll to and click the “Donate to Team Lymphie Life” button
- Follow the instructions to make your contribution
Your Impact
Your contributions to Brylan’s Feat Foundation will help the organization in two main areas: providing treatment and supporting Camp Watchme.
Treatment Recipients
Annual budget: $75,000
Pediatric patients around the world use Brylan’s Feat Foundation as a resource to provide life-changing treatment, including financial assistance and/or access to custom garments, bandaging supplies, therapy sessions, surgical procedures, and pneumatic pumps.
Camp Watchme
Annual budget: $80,000
Camp Watchme allows children to have the quintessential summer camp experience, meet other children with the same disease as them, learn more about lymphedma, and receive treatment from certified lymphedema therapists. Parents receive invaluable education and emotional support through group sessions and get to see their children thrive.
Thank you in advance for joining me in supporting the important work of this charity. With your help, they can continue their efforts of providing for the youngest warriors fighting lymphedema.
