Today we’d like to introduce you to Brittany Williams.
Brittany, please share your story with us. How did you get to where you are today?
I am a wife, mother of four, lymphedema advocate and founder of Brylan’s Feat Foundation. My relationship with lymphedema unknowingly started when I was pregnant with my only daughter, Brylan. At her one month check-up, 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 ten 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 across the country to Boston Children’s Hospital to finally receive a diagnosis of infant onset primary lymphedema. After hearing her diagnosis, the only thing I could think about was how do I fix this? I’m her mom and that’s my job to make things better.
Lymphedema is the chronic swelling in parts of the body where the lymphatic system isn’t working properly. There are two types of Lymphedema, Primary and Secondary. Primary Lymphedema is due to abnormal development of the lymphatic system. Secondary Lymphedema occurs when there is damage/trauma to the lymphatic system such as cancer treatment. Although there is currently no cure for this disease, it can be managed through rather costly customized compression garments and wraps, physical therapy, compression pumps, and surgery for severe cases. Children who do not receive treatment are more prone to secondary/life-threatening infections, psychological issues, orthopedic problems, and eventual disability.
My husband and I took a few days to process her diagnosis. And 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 using her young age as a crutch wasn’t a plan I was okay with.
I completely immersed myself into the lymphedema community and desperately searched for patients and other parents to speak with. 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, although with the small amount of help from insurance, Brylan’s first set of garments cost a little over $400. Customized compression garments need to be replaced every 4-6 months because the elasticity wears out and causes the garment to become less effective. A few months had gone 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 and took her to her 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 Brylan’s treatment plan earlier in her life has made things much easier as she has gotten older. Brylan, who is now 6, sees her compression treatment as part of her normal routine. Of course she has her rebellious moments and there are tough days where 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 whoever 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 be able to give hope to the parents and their children because I knew what they were going through. Just like the other parents, 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 of 2018, there is finally a resource for families affected by pediatric lymphedema to turn to. We are the first and only organization specific to supporting children fighting 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. To date, Brylan’s Feat Foundation has been able to provide financial support for 20 children (and counting) on a continuous basis.
Brylan’s Feat Foundation has expanded our efforts of supporting children fighting lymphedema by hosting the first and only summer camp in the United States, Camp Watchme. We will be hosting Camp Watchme for the second year in July of 2020.
We’re always bombarded by how great it is to pursue your passion, etc – but we’ve spoken with enough people to know that it’s not always easy. Overall, would you say things have been easy for you?
No, it has not. As mentioned previously, finding a diagnosis for my daughter was an uphill battle. Even though lymphedema is estimated to affect more Americans than MS, Muscular Dystrophy, AIDS, and Parkinson’s combined, it was really hard to find a knowledgeable doctor and find educational resources. I was determined to help my daughter and I knew that I had to be the one to fight for her and be her advocate.
On the nonprofit side of things, I had no experience in that world. I was a stay at home mom and it wasn’t easy to take on the full-time job of a nonprofit with three children under the age of 5 at the time. Many companies thought I would fail and didn’t want to support a new nonprofit. Many long days ended in tears, but my husband continued to encourage me. I was exhausted but continued to stay positive, write emails, make phone calls, and send letters until I got my first sponsor. I definitely made mistakes along the way, but I learned from them and turned Brylan’s Feat Foundation into a successful nonprofit that continues to grow everyday.
Please tell us about Brylan’s Feat Foundation.
Brylan’s Feat Foundation is the first and only nonprofit for children with lymphedema. Our slogan is simply “supporting children fighting lymphedema,” and that is exactly what we do. We are a financial resource for children in need to receive lymphedema treatment, raise awareness, and promote education. We try to give families all the tools needed to support them during their lymphedema journey. We truly want parents and caregivers to have somewhere to turn to for information and encouragement.
Sticking with the theme of our slogan, we created the first and only US camp for children with lymphedema. Camp Watchme provides a unique experience for one child and one parent/caregiver to spend a few days learning about lymphedema, accessing treatment options, and also having a quintessential summer camp experience.
The best part about my organization is seeing a child receive treatment that would otherwise not be able to acquire it. Giving back to children fighting the same disease as my daughter means the world to me.
Has luck played a meaningful role in your life and business?
I don’t feel our situation is lucky or unlucky. I look at our daughter being diagnosed with lymphedema as an opportunity to create a positive impact on the pediatric lymphedema community.
Contact Info:
- Address: 7435 E. Stetson Drive
Suite A
Scottsdale, AZ 85251 - Website: www.brylansfeat.org
- Phone: 872-302-7546
- Email: [email protected]
Image Credit:
Nicole Leann Photography
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