As a mom, I am always willing to go to the ends of the Earth when it comes to my children, especially when their health is in question. When my daughter was one month old, we noticed swelling on her foot. We were told by our pediatrician that we could waitand see or be proactive. The appointment for genetic testing was made within the same day. After several tests, we still had no answers and that was not okay with me. I took my daughter to 8 different doctors and did my own research which finally landed us across the country at Boston Children’s Hospital where we received a diagnosis, infant onset primary lymphedema in both feet and legs. I was relieved to finally know what this swelling was, but frustrated that it took this much work and effort to get to this point. Looking back, I don’t understand why lymphedema was never brought up by any of the doctors. How is there such a lack of education of a disease that affects so many? Once I was thrown into the lymphedema world, I quickly realized that a lot of things didn’t make sense. The lack of awareness and education was huge, but the struggle to get my daughter treatment was something I just couldn’t get over. Not only are customized compression garments expensive, it is a very long and drawn out process when it comes to dealing with insurance and it took me a month to find a PT to take on my daughter’s case simply because of her age. All together it took a total of 6 weeks to get my daughter compression garments and then by that time, she had a growth spurt and we had to remeasure and start the process all over again. My daughter has been able to manage her lymphedema through customized daytime garments and nighttime bandaging. We are very blessed to be able to afford her treatment, but their are so many families that are unable to. As I immersed myself into the lymphedema community, especially children, I knew I wanted to find a way to give back.
I started Brylan’s Feat Foundation in May of 2018 to serve as a financial resource for children in need to receive treatment for their lymphedema. Whether you have insurance or not, if you cannot afford treatment, we are here to help. Brylan’s Feat Foundation will help with treatment such as customized nighttime and daytime garments, bandages, therapy, and surgery. We are dedicated to raising awareness and aiding in research to find a cure. Every child deserves the opportunity to live their best life, so please reach out if your child is in need of financial assistance for lymphedema treatment.