You wouldn’t know it by the smile on her face that Kylie Hodges has an incurable disease.
The 18-year-old was diagnosed with Primary Lymphedema, a rare, inherited condition, in her left leg three years ago. Lymphedema occurs when lymph vessels are unable to adequately drain lymph fluid, usually from an arm or leg.
Her dad, Shannon Hodges, explained that Kylie was basically “born with damaged lymph nodes.” However, it wasn’t discovered until suffered a stress fracture in her foot. Turns out the damaged lymph nodes didn’t allow the lymphatic fluid to drain, causing her leg to constantly stay swollen.
The swelling wasn’t contained to just the lower leg, though, and it spread up the leg and into her hip. In just three years, Kylie’s left leg has doubled the size of her right leg.
Rather than hiding her condition, Kylie refuses to let Lymphedema keep her from being a normal teenager. She wears shorts when she wants to, goes out in public without hiding her leg. She also loves to dance and cheer with the rest of her friends at Airline High School.
“It’s not painful. It’s more of a self-esteem thing,” Kylie explained. “It took some time getting used to since one leg is bigger than the other. I’m still going to dance. I’m still going to cheer. I am still self-conscious about it, but the people I surround myself with here know about it and it’s not a big deal.”
Over the years, Kylie has performed in front of many crowds and students at various events. Her ability to perform without fear of judgement is something that her parents are proud of the most.
“The courage it takes to face life with all its challenges and to not hide her condition just amazes me,” Shannon Hodges writes. “How many others would have that strength? I don’t think I could. Kylie is the strongest person I know and I’m so proud to be her father.”
There is currently no cure for Lymphedema and Kylie will most likely have to wear a compression stocking for the rest of her life. She also uses a manual drainage pump nightly, which fits over her entire lower half below the chest, for 2 hours each night, a process that is supposed to keep the lymphatic system moving. It hasn’t done much to reduce the swelling though.
While there is treatment, Kylie and her family are holding on to their faith and hope that one day there will be a cure. Kylie’s dad made a promise to her when she was 15 that he would find a way to get her help. They have found a doctor in California who can perform a procedure that is “successful in reducing the effects of Lymphedema.”
Her family and friends are raising money to get Kylie the help she needs. They are expecting medical costs to be “around the $75,000 figure” and have been told “not to expect insurance to help out much either” since it is a new procedure.
“Although her mother and I do all we can, these procedures are very expensive and we need help for our daughter,” Shannon Hodges writes. “The hope is that with these procedures, Kylie may be able to get out the compression stockings and pump one day and be able to live a normal life, without worrying about the life long complications associated with Lymphedema.”