What's Up Wednesday -- Leeya

#WhatsUpWednesday is our chance to hear from the teens and young adults who are involved with the Speak Now for Kids community. This week’s post will focus on 17-year-old Leeya from Le Bonheur Children’s Hospital. A fun, smart young lady, Leeya has endured multiple life-changing events since being diagnosed with a vascular anomaly that impacted her lymphatic system. Through it all, she managed to keep up her grades in school and volunteer to give back to her community.

Leeya is service-minded and a big advocate for children’s health. She was elected president of her youth group and now volunteers with the Le Bonheur Children's Hospital teen group. In a truly inspiring expression of gratitude to Le Bonheur, Leeya rallied her youth group to organize a fashion show that raised $1,200 for the hospital. There seems to be no limit to what Leeya can accomplish when she sets her mind to it.

So Leeya… what’s up?

Why I advocate I advocate for all the children and their families who may not have the best resources for insurance, medical specialists, or a good local hospital.

My favorite moment from the 2018 Family Advocacy Day Definitely meeting and interviewing Dr. Arnold! I have been a huge fan of her show for a long time. I have always thought that Dr. Arnold and her husband, Bill, are amazing in raising awareness for children’s health. I truly admire how they are teaching the world that your physical appearance and the challenges you overcome do not dictate who you are.

What my children’s hospital means to me Everyone at LeBonheur is like my second family. Not only did they help me recover from my medical condition, they’ve also made a huge impact on what I want to do in life. LeBonheur has made me realize that hospitals do not have to be scary and that I should not be afraid of doctors and nurses. I could not ask for a better medical team!

What I want the world to know about my condition Generalized lymphatic anomaly (GLA) is an extremely rare condition with less than 200 known cases in the United States. Most of my bones are affected along with my spleen, but my case is not severe compared to many others with the same condition. I want people to know that my condition does not have enough research money. You can check out to learn more about my condition!

What makes me unique My condition and also how I spell my name, Leeya! Another thing that makes me special is that I am not letting my condition and everything that comes along with it stop me from what I want to do in my life. I am definitely using all the bad things that have happened to me for good.

What have I overcome I have overcome neuropathic (chronic) pain. I have overcome a major lymphatic leak due to a complication from a biopsy. I have overcome being diagnosed in my sophomore year of high school. I was absent from school for most of the first semester, and still kept up my grades and even being inducted into the National Honor Society.

How I plan to give back to the world I want to help children’s hospitals. I want to improve inpatient services. One example is by improving the equipment, care, and activities for teenage patients. I also want to help improve outpatient services by making sure that the systems can transfer orders from a patient's inpatient stay. I also want to improve communications between children's hospitals especially when it pertains to kids with rare conditions who need care from multiple hospitals.

What I want to be when I grow up I want to work in hospital administration. 

My favorite subject in school My favorite subject in school is math because I love the satisfaction I get when I figure out a problem!

What I’m excited about the most for the upcoming school year I am most excited to have a "normal" senior year of high school. My condition is stable so I am hoping that I can make it through the school days and do my homework with as little accommodations as possible.

Didn’t see Leeya’s original Speak Now for Kids Family Advocacy Post? Just click here.

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