A guest blog by Brittany Williams and Betty Westbrook. This is an 8-minute read.
Brittany’s Story: Pediatric Lymphedema and the Brylan’s Feat Foundation
When my daughter Brylan was born, she came home a completely healthy baby. But at her one-month appointment, we noticed some swelling on the top of her foot. Over the course of ten months, we went to a total of eight different doctors seeking a diagnosis for the swelling that was progressing up her leg.
None of the doctors could give us definitive answers. The blood work, genetic tests, and various scans were all coming back normal. I was extremely frustrated but never gave up because I knew that I was Brylan's best chance at getting answers. I continued to do my own research, which landed us at Boston Children's Hospital. My daughter was diagnosed with infant-onset primary lymphedema.
After Brylan’s diagnosis, I joined Facebook support groups and reached out to other parents. I immediately came across numerous stories of families going through similar experiences and struggling to find resources or afford treatment.
Although my husband and I are fortunate enough to be able to provide what Brylan needs for treatment, we wanted to give back and provide other children diagnosed with lymphedema the same opportunity as Brylan: the opportunity to fight this disease. Luckily, my husband was already familiar with the nonprofit world. So together, we set up Brylan's Feat Foundation in May of 2018 to help families financially with receiving treatment. We also strive to spread awareness, provide education and emotional support, and to offer other resources to guide them in their lymphedema journey.
Through support groups, I got into contact with the mom of a little girl named Cora in Minnesota who has severe lymphedema below the belly button and in her arms and hands. She was the first child that Brylan's Feat was able to help by providing funds for her to travel to Germany to be seen by experts. It is a terrific feeling to be able to give children fighting the same disease as my daughter aid for treatment that they might otherwise not be able to acquire. Before long, we went on to help many more families. To date, we have assisted 20 families by providing treatment, whether it's customized garments, therapy, bandages, or even surgery.
Betty’s Story: A Clinician’s View of Pediatric Lymphedema
I am a Physical Therapist Assistant and CLT, and I came across lymphedema as an accident and became passionate about fighting it. I love telling people about lymphedema, providing resources, and promoting education to help those who have it.
I feel it is my mission to help others learn about lymphedema. I want to do everything I can to help them and have since started a podcast to help educate people around the world. Because our missions are so similar, Brittany and I joined forces in the summer of 2019. Brylan’s Feat Foundation now includes active resources and events like Camp Watchme, where I am the director.
We’ll talk more about that later but first, let’s look at what pediatric lymphedema is and what it means for the children who have it.
What is Pediatric Lymphedema?
Pediatric lymphedema occurs when a child has a chronic accumulation of fluid that causes a region of their body to swell. That unresolved swelling can lead to the buildup of fibrotic tissue along with skin changes that can cause mobility issues.
Lymphedema is categorized as either primary or secondary lymphedema. Primary pediatric lymphedema has been linked to more than 40 chronic diseases, including Milroy’s disease, Meige’s disease, Noonan’s syndrome, Turner’s syndrome, Klippel-Trenaunay syndrome, Parkes Weber syndrome, and amniotic band syndrome.
Secondary pediatric lymphedema occurs when a child has damage to their lymphatic system. Some secondary causes include cancer treatment, surgery, infection, trauma, and other conditions. From a parent’s point of view, one of the main differences between primary and secondary pediatric lymphedema is that secondary lymphedema is easier to recognize because it occurs after a significant event, like surgery.
Primary pediatric lymphedema is more difficult to identify and understand, especially for the families who do not have a family history. In this article, we’ll focus on primary lymphedema and the challenges we face with building awareness and helping people find the treatment and resources they need.
Betty Shares the Challenges of Public Awareness
Pediatric lymphedema patients are relatively rare, even within the medical world of lymphedema. When people think of lymphedema, they think of an adult. I have only seen one pediatric lymphedema patient in my clinic.
So how do we spread the message about lymphedema so we can open up awareness to the whole world? It’s not just a public awareness issue. It’s a matter of families being able to find evidence-based medical treatment, reliable information about pediatric lymphedema, and easy access to resources to manage the condition.
Here’s an example. I knew a child whose mother had been securing their bandages with a bit of hot glue. The mom was truly trying her best to find a solution and keep the bandage on her child, but of course, as medical professionals and clinicians, we know hot glue isn’t a good solution.
Because the child would wear these bandages for long periods of time, it was hard to keep the bandages clean and fastened. The mom didn’t have the resources she needed to provide her child with the best supplies, and, on top of all that, doctors struggled to provide the family with the information and support they needed.
While in treatment I could provide the child with sleeves and other items to help manage the lymphedema, but I knew I would be little help after he was discharged. Seeing the difference these resources made, I quickly realized something needed to be done so that no other child would end up in this situation--feeling alone with no one to give them reliable information about this disease. That got my mind swirling with ideas for helping families of children with lymphedema.
We need more awareness among medical professionals, educators, school systems, coaches, and other people who regularly have contact with children. As a society, we do the same with diabetes and autism--we help people learn the facts--and pediatric lymphedema needs a boost in awareness too.
Brittany’s Reminders About Pediatric Lymphedema
I’d like to share some important things to keep in mind about pediatric lymphedema. First, the parents of children with lymphedema are desperate for help. Some parents don’t even fully understand that the condition is chronic and will not just go away. I meet many kids who aren’t compliant with treatment and really need a lot of encouragement.
Kids can learn what it means to manage their chronic condition when they attend Camp Watchme. They find out just how critical it is to be compliant with daily compression and how to make healthy choices about eating and exercise. Encouraging compliance as the foundation of managing lymphedema is important. It makes a major impact on a child’s life and future health.
Also, these families need options. For example, what happens when a young child wants to go to a sleepover at a friend or family member’s house and those adults don’t quite understand how to do their wrappings? They need a specialty type of wrap that’s easier for a novice to use. Brylan’s Feat Foundation helps them find these resources for specialized materials.
The goal, of course, is to promote compliance and prevent hospitalization. The key is educating families about the life-long reality of pediatric lymphedema. Sure, it’s inconvenient to deal with bandages and such, but the reality is that this condition will worsen significantly if they don’t deal with it head-on and take action early in the child’s life to make a habit of the best practices for treatment.
For medical professionals who work with pediatric lymphedema, that’s an important message we’d like to share. This condition is chronic and difficult to manage, but parents and doctors can improve its lifelong impact by encouraging children to stay compliant with treatment.
Brittany Explains Brylan’s Feat Foundation & Creating Camp Watchme
Brylan’s Feat Foundation’s tagline is simply, “supporting children fighting lymphedema.” In keeping with that theme, it only made sense to put together a summer camp specifically for pediatric lymphedema patients.
Camp Watchme is the first and only summer camp in the United States for children with lymphedema. Camp Watchme was Betty’s brainchild, but her initial thought of having a two-year plan to get the camp up and running quickly went out the door.
Once she and I connected, we were able to put things together rather quickly. And we definitely had some help along the way, including input from a dear friend of ours, Amy Rivera, who is the founder of Ninjas Fighting Lymphedema. Leave it to three determined women to put a summer camp together in just under 75 days!
Our goal was to start a pilot program with 5 to 10 children. We wanted to provide these children with a sense of community and fellowship so they could meet others with lymphedema. Kids rarely--if ever--see another kid with lymphedema. To meet and see someone who shares a physical likeness is very powerful for children.
Not only did we host children, but each child brought a parent along with them. We wanted to include a parent/caregiver so that they could learn more about lymphedema and meet other parents who also understand firsthand the emotional and mental burden of caring for a child with lymphedema. Needless to say, our test year was a great success and we are gearing up for our second year.
This year, Camp Watchme will be held in Winter Park, CO from July 8 to 12, 2020. The camp is open to children ages 3 to 17 from around the world. It helps that the children see kids of various ages who understand what they’re going through.
At camp, we provide a safe and nurturing environment for all campers where they can enjoy a quintessential camp experience with crafts and fun outdoor activities. The children and their parents get to learn more about lymphedema and we help them understand which healthy habits are best for them.
Every day holds new opportunities: education on treatment options, therapist Q&As, support group sessions, even on-site treatment. Each child will receive 1 to 2 treatment sessions per day, provided by a CLT. It’s amazing to see how much the kids enjoy learning and making lifelong friends at Camp Watchme.
Where did the name Camp Watchme come from? That same child that had the hot-glue-gunned bandages was challenged by teachers who thought he couldn’t do certain physical activities. He told Betty how he struggled to advocate for himself. To help him find the words to use, Betty encouraged him to say, “I can do it. Watch me.”
We want every child who attends Camp Watchme to leave feeling empowered to say "watch me" the next time someone tells them to sit this one out, or, you might get hurt doing that. Imagine how their future could change if, from an early age, they are encouraged to stay active physically, as well as in their education about lymphedema.
Supporting Brylan’s Feat Foundation
We’d like to welcome children and their families to take advantage of the ample resources offered by Brylan’s Feat Foundation. We are grateful for donations of any size to help support us. Together, we can spread the word about pediatric lymphedema and help children find the best outcomes possible.
About the Authors:
Brittany Williams is the mother of Brylan, who has pediatric lymphedema. Brittany is the founder of Brylan’s Feat Foundation, a nonprofit 501c3 foundation, established after struggling to get a proper diagnosis and treatment for Brylan. The foundation helps families manage the costs of medically-necessary treatment and support them with resources about pediatric lymphedema.
Betty Westbrook is a Certified Lymphedema Therapist in Texarkana, Texas and works in a hospital-based outpatient clinic as a Physical Therapist Assistant. She is passionate about educating others about lymphedema and established the Lymphedema Podcast to provide a steady stream of helpful information. She is the director of Camp Watchme.