“Ruby came out of that bathroom wearing shorts – and she had not worn shorts all year in public,” Julie exclaimed emphatically. Ruby suddenly ran into a bathroom with her carry-on bag. Having only been in clinics surrounded by adults with lymphedema, Ruby had never seen another child like her wearing garments. 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. 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. It gave her the confidence to wear her garments and to show off her legs.” “Her face lit up when she saw that there were other kids with garments on, wearing them so confidently. “The first year we attended was pretty amazing for Mady’s psychological and psychosocial development,” Allie said. 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. She stumbled upon Brylan’s Feat as she researched pediatric lymphedema and soon discovered Camp WatchMe and immediately registered her daughter, Mady. 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. Lymphedema is a progressive, chronic disease that currently has no cure, but can be managed with treatment. “I felt there had to be some sort of research for children with lymphedema – but there was none that I could find.”
“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. Due to the fact that primary lymphedema is extremely rare, with only 1 in 100,000 children being diagnosed with primary onset lymphedema a year 1, 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. Primary, when chronic swelling occurs because the lymphatic system did not develop correctly and secondary, when damage or trauma occurs to the lymphatic system.įor 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. Lymphedema, or localized swelling of a part of the body, has two main types. Daily treatment and educational sessions are given to both campers and parents alike, ranging from MLD (manual lymphatic drainage) basics to nutrition for lymphedema.
WATCHME EXPLAINED FREE
It provides the same “summer camp experiences” noted above, but it also provides free treatment from certified lymphedema therapists to its campers.
This is Camp WatchMe.Ĭamp WatchMe is the first and only summer camp in North America for children between ages 5 and 17 who have lymphedema. 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. 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.
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