Emma’s Story

by Heather on February 25, 2016

Hi, I’m Emma and I’m 7. I was born with Lymphedema in my legs and feet, sometimes it moves to my belly too.

I don’t like having lymphedema, there’s really nothing good about lymphedema. I’ve been getting a lot of infections this year and they hurt and make me feel really sick. Sometimes even the doctors don’t know how to help me. My mom gets sad because she knows I’m sick but the doctors don’t believe her, it makes me sad too. My first cellulitis infection was when I was 2, and then 4 (lymphangitis), then 6, and since then I’ve had 4 more. They are scary and painful, they make me feel really, really sick. The newest bad part is my garment. After a few years of fighting, my insurance company finally approved a garment for me. After waiting so long I’m sad that it doesn’t fit right and pinches my skin. I’m not strong enough to pull it up myself so wearing it to school is really hard. But it’s important I wear it, so I just keep trying.

I like pretty shoes but they hurt my feet and I don’t like when kids ask me why I always have to cover my legs, because I don’t want to talk about it. Lymphedema is not fun. But that’s what I’ve learned about my disease, the only way to be ok is to always be brave. Even though I have lymphedema I can do mostly everything I want. I can swim and take dance class and I’m getting to be good at baseball because my brother helps me.

You can’t just be bummed out that you have lymphedema so I’m going to always try to find a cure. That’s why I joined Lymphatic Education & Research Network. I advocate for them to help everyone who suffers with a lymphatic disease. Last March I was honored in Albany, NY with a resolution from the Assembly and Senate for my advocacy. It was one of the coolest days of my life. Every year I fundraise and attend LERN’s New York walk, last year I raised $4,500. At the walk in September they also named me a Youth Ambassador and I got an award. I made a speech too, and I’m only 7. If I can do something hard for me, like walk across the Brooklyn Bridge and back, then maybe a smart scientist can do what’s hard for them and find a cure. I try to raise money so we can research my disease and make it better. I even started a lemonade stand for LERN so we can raise more money. We cut the lemons, add water and sugar and shake-shake-shake. I already have more events booked for 2016.

My team to kick Lymphedema’s butt (mom, can I say that?) is called Emma’s Incredibles-Team Lymphedema, because mom and dad say I’m a superhero. I think till I’m about 87 I’ll walk the Brooklyn Bridge until we find a cure…or maybe if I’m lucky I’ll only be 14. I have to try my best to raise awareness so me and Kathy Bates and all the people that have lymphedema don’t have to get sad and hurt and have swelling anymore.

I’m excited to attend Rare Disease Day in Albany, NY this March to tell more people about lymphedema and why we need more help to take care of it. I want to ask the legislators why everyone ignores my disease, how come they don’t care enough to keep me healthy? My New Year’s resolution this year is to get The Lymphedema Treatment Act passed. I surprised my mom with my idea and made her really proud so she’s going to help me get it passed. I decided it’s the best way to start to help everyone with lymphedema.

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