Summer camp. We all have the image in our heads of bunk beds, cabins, bon fires, and most importantly, fun and safe outdoor recreational activities that foster youth development and personal growth. While most kids are excited to see friends and just have some fun, they aren’t yearning for a summer camp experience based around inclusivity and a bit of normalcy where their differences aren’t reviled but rather embraced. This is Camp WatchMe.
Camp WatchMe is the first and only summer camp in North America for children between ages 5 and 17 who have lymphedema. It provides the same “summer camp experiences” noted above, but it also provides free treatment from certified lymphedema therapists to its campers. Daily treatment and educational sessions are given to both campers and parents alike, ranging from MLD (manual lymphatic drainage) basics to nutrition for lymphedema.
Lymphedema, or localized swelling of a part of the body, has two main types. Primary, when chronic swelling occurs because the lymphatic system did not develop correctly and secondary, when damage or trauma occurs to the lymphatic system.
For Brittany Williams, founder of Brylan’s Feat Foundation, her daughter Brylan’s swelling appeared on the top of her foot at just 1 month of age. Due to the fact that primary lymphedema is extremely rare, with only 1 in 100,000 children being diagnosed with primary onset lymphedema a year1, it took ten months of visiting dozens of different specialists all across the country before the diagnosis of lymphedema could be given, at 11 months of age.
“I started doing my own research and after seeing too many photos of lymphedema cases with those who lacked proper care, it was motivation for me to say, ‘that is never going to by my kid,” Brittany said. “I felt there had to be some sort of research for children with lymphedema – but there was none that I could find.”
Lymphedema is a progressive, chronic disease that currently has no cure, but can be managed with treatment.
After 4 years of diligent work, Brittany created Brylan’s Feat Foundation, a non-profit organization that originally started as a garment fund for children in the US but quickly transformed into an international non-profit with over 130 recipients in over 22 countries worldwide serviced today. Its mission is to assist in providing necessary treatment for pediatric lymphedema patients who are in financial need, as well as to help raise awareness and promote education of the disease.
Effective lymphedema management consists of a combination of treatment methods, such as combining garments with nightly short-stretch bandaging, which helps reduce swelling. Customized compression garments must be properly sized and replaced every 4-6 months. As children grow more quickly through their early years, garments are often switched out even sooner to ensure a proper fit. Despite being quite expensive, they are not covered by insurance.
The high cost of care led Allie Prelaske to seek out assistance online for her daughter, who was diagnosed with lymphedema at the age of 11, right around the time of puberty. She stumbled upon Brylan’s Feat as she researched pediatric lymphedema and soon discovered Camp WatchMe and immediately registered her daughter, Mady. Although originally it was the financial burden of care maintenance that initiated her research, she soon found that the connections she and her daughter would gain from the camp was really what they were longing to find.
“The first year we attended was pretty amazing for Mady’s psychological and psychosocial development,” Allie said. “Her face lit up when she saw that there were other kids with garments on, wearing them so confidently. It gave her the confidence to wear her garments and to show off her legs.”
Julie Cohen, mother to Ruby who was diagnosed with primary lymphedema at the age of 6, also sought inclusivity for her daughter to feel like everyone else. She notes that when she and her daughter arrived at the Denver airport in route to Camp WatchMe, they spotted a fellow camper who was wearing compression garments. Having only been in clinics surrounded by adults with lymphedema, Ruby had never seen another child like her wearing garments. Ruby suddenly ran into a bathroom with her carry-on bag.
“Ruby came out of that bathroom wearing shorts – and she had not worn shorts all year in public,” Julie exclaimed emphatically. “All it took was seeing a fellow child in garments – that symbolized the camp for me in a nutshell and we hadn’t even arrived at the camp yet.”
In the case of early onset primary lymphedema, support is not only beneficial but required for both children and parents alike. Camp WatchMe enlists therapists from all across the country, who volunteer their time and are designated to each family and provide morning and evening treatments, explaining the basics of care, like the gold standard of short-stretch bandaging.
Christopher Miles, a lymphedema specialist for over 19 years and the Director of Wound Care at medi® USA, saw first-hand as he attended the 2022 Camp WatchMe, the amazing experience it provides campers and parents.
“This event really opened my eyes to how isolated both the children and parents are in their communities. It is uncommon that a primary lymphedema child or parent for that matter, would interact with others in their community in a similar situation,” Christopher explained. “I can only imagine how this weighs on their minds as they attempt to navigate through the many lymphedema management challenges. But with this camp, the kids can interact, play and just do ‘kid stuff’ while the parents benefit through the network of support they receive.”
It’s the education and treatment aspect of Camp WatchMe that truly differentiates the camp from other summer camps, as Brittany explained. “The hope is that, especially for first-time families who attend, they come and they learn and then they go home and they implement it.”
Lymphedema is a progressive disease and does not go away. Children who do not receive proper care are more likely to suffer from life-threatening issues later in life.2
Houda Crable, mother of 9-year-old Reid who was diagnosed at 2 months old with primary lymphedema, credited the excellent care provided by their personal CLT at the camp who made each treatment a positive experience.
“Their treatments were done in such a fun atmosphere that it truly helped create positivity around the care. And it’s continued since we’ve been home! Reid will say, ‘OK, mom, when are we going to bandage – it’s not something that he dreads or fights me on – he encourages and even asks for it.”
And while all of the parents who attend Camp WatchMe with their children have a great understanding of lymphedema and practice proper care from their own personal research, even they learn and take something away from camp that they didn’t know before.
Kerri Kulesza Rossi, who’s daughter Drew was diagnosed with primary lymphedema around 1.5 years old, and is a nurse practitioner herself, said she learned so much from every lecture she attended while at the camp.
“The people there, from every rep to the surgeon who spoke, provided a wealth of knowledge and information,” Kerri said. “There were experts there who understood lymphedema but who also truly cared. You could see they wanted our kids to succeed and get the best standard of care for their lymphedema. I could cry just thinking about it again – it has even motivated me as a medical professional to get certified in lymphedema therapy . I see the need and I want to make an impact.”
The camp is special because it brings together various vendors to help educate and train these families. As Brittany exclaimed, “We are stronger together and we want to give parents as many resources as possible to make the best decisions for their child’s care.”
Erik Berens, who attended Camp WatchMe as a vendor supporter for the medi for help foundation and assisted with fittings and the delivery of needed compression garments, realized that while those garments were important, they were just the cherry on top of the sundae that is Camp Watch Me.
“The real benefit of Came WatchMe is the education and training at a very high-level that the children and their parents receive. I would like to think that even without any clinical training, I still brought some level of value with local knowledge of each child’s market to help them continue their success with treatment and supplies when they return home.”
Mady, Allie Prelaske’s daughter, is now at the age where she does a lot of her own care herself, and her mother credits the camp with fostering that.
“The level of independence in care she has personally gained from camp – the tools, the techniques – it’s amazing,” says Allie. “She was and still is so proud anytime she wraps herself.”
That independence and foundation of self-care was crafted at the camp, and Allie notes that the camp’s name is rather fitting.
“Mady was never told that she couldn’t do something because of her illness while at camp. She could ride a horse; she could swim in the pool – it was overwhelming for her emotionally. She would say to me, “Watch me do this now, mom!”
In the past 4 years, there have been 3 camps, and according to Brittany, she doesn’t plan to stop them any time soon.
“The camp experience is life-changing for so many families. I will continue to do everything in my power to make sure that this camp is available for these families every summer.”
Even beyond camp, though, Brittany and the team behind Brylan’s Feat Foundation is a continual support system.
“We are not a community that just stops when the camp stops. We don’t ever want anyone to feel like they no longer have the support they need once camp ends. We are still here and we will keep fighting for them.”
Camp WatchMe 2023 will return to YMCA of the Rockies in Estes Park, Co. bringing together first-time campers, alumni (second-time campers) and the “reunion crew” or those who are returning for 3 or more camps.
To learn more about pediatric lymphedema or Camp WatchMe, visit www.brylansfeat.org.
To learn more about medi for help, visit https://www.medi-for-help.com/en/