PO Box 16, Monett, MO 65708 support@emilyslight.org

Emily’s Story

This is Emily Inin Burnett, a wonderful daughter, genuine friend, and incredible sister. Here is her tale of life with cystic fibrosis.

At a dairy farm in Missouri, 2010

Emily was born on Mother’s Day 1984 near Boston, the second child of Gail and Bruce Burnett. Despite her parents efforts, her early childhood was marked by frequent bouts of pneumonia and persistent, severe stomachaches, a problem that her doctors couldn’t figure out. At age four and a half, Emily’s symptoms were finally recognized as cystic fibrosis.

Within days Emily was getting the treatment she needed. Her life took off.

Emily at home, 1990

So what is cystic fibrosis (CF) anyways?

Cystic fibrosis is a recessive genetic disorder that affects a person’s secretory system (mucus, sweat, and enzymes). For Emily and the 1,000 Americans diagnosed each year, mostly of Northern European descent, life is a struggle against thick mucus that blocks airways and a stomach that can’t digest well.

Without a cure (yet), all Emily could do was manage her symptoms. That meant enzyme pills with every meal, two hours a day of inhalers, and special therapy to shake loose the mucus coating her lungs. As she got older, her health would sometimes deteriorate so quickly from a lung infection that she needed to spend a week or more recuperating in the hospital. To her everlasting credit, Emily never complained about the pain she lived with or how unfair it all was.

Instead, Emily lived like she knew a secret.

She made friends wherever she went and kept in touch with many of them. She loved animals, especially her cats and Chihuahuas, and they loved her back. Over her life, Emily adopted and fostered dozens of animals, giving her time and resources to keep them healthy and happy.

With Ben the cat, Maine 1991

One of the greatest things about Emily is that she never let cystic fibrosis be a roadblock in her life or stop her from competing. From elementary through high school, she played sports and played to win. Emily loved the challenge of center midfield in soccer. She was strong in freestyle and butterfly on the swim team. And she was one of the best pitchers on our high school’s varsity softball team.

What reduced lung function?

Emily in Hawaii, 1999

Academically she shined, carried by a love for reading that started in early childhood. After graduating second in her class from high school, Emily earned her bachelors degree in American Literature and Culture from UCLA. She hoped one day to work as an English teacher.

Emily’s favorite reading nook, 1989

But soon after graduation, Emily took an interest in a different career – law. She weighed many options and settled on UNC Chapel Hill, one of the top law schools in the country and conveniently close to her family in North Carolina. After moving, Emily applied and was accepted into the UNC-CH J.D. program. Three years later in front of Attorney General Eric Holder, Emily crossed the stage to receive her diploma, adorned with her characteristic big smile and Rainbow sandals.

Emily receiving her law diploma, 2012

After graduation, Emily passed the Texas bar exam and clerked for federal district court judges in Laredo and Amarillo. Desiring a return to her birth state, Emily passed the Massachusetts bar and then clerked for the State Superior Courts in Boston and New Bedford. In case life took her there, Emily also passed the New York bar exam on her first try.

Over the course of her high-profile clerkships in Texas and Masschusetts, Emily researched and wrote opinions that are now part of United States legal precedent.

Emily and Doug, July 2010

Like all great stories, love steered Emily into the next chapter of her life. Wanting to continue her career and stay at Doug’s side, himself a military officer and attorney with no say in his posting, Emily took on a work-from-home job doing contract law for a major clinical research company. It was the win-win she waited years for.

Emily had finally lined up everything she dreamed of. A bachelors and law degree. A home full of cats and dogs. Plans for marriage and kids. A job that mattered to her and made a lasting difference in the world.

All the while, Emily kept living. She traveled coast to coast visiting family and friends.  She adventured around the world. She loved nights out on the town with friends. She made impromptu multi-hour drives to be with someone going through a tough time or just to say hi. Even when she was hospitalized with another lung infection, she’d call mom and dad sounding strong, assuring them that she’d be okay.

For me and many of her friends, Emily’s CF was easy to forget in her presence – even with the coughing and tissues she never tried to hide. She was always quick to laugh and smile, and witty enough to make everyone else laugh and smile too. She listened well and spoke directly, sharing her positivity and compassion in so many ways.

When it came to doing what she thought was right, Emily was fearless.

Emily and Doug on vacation at Great Smoky Mountains NP, 2011

Emily’s life was special, a shining light to everyone lucky enough to know her. And she had cystic fibrosis.

Before Emily’s sudden passing on Thanksgiving eve of 2016, she and Doug were planning a small scholarship. Her dream? To encourage kids with CF to pursue higher education, regardless of the adversity and unfairly shortened life expectancy that Emily knew all too well.

More than ever, we want to keep Emily’s dream alive, to make her light shine even brighter. We want to get Emily’s story out to inspire the thousands of kids living with cystic fibrosis, to tell them truthfully that a shorter life can still be full and meaningful.

Please contribute what you can and share this page with your friends and family.

Thank you for your time and kindness.

Sincerely,
Iain Burnett & Douglas Hansen

9 Comments on “Emily’s Story

  1. Why am I going to donate? Out of love for my sister Emily, and an appreciation for not just how much she accomplished, but how she accomplished it with humor, humility, and kindness. You’re awesome Emily.

  2. Many tears were shed as I read Emily’s story. We miss her so much and the life that Emily and Doug would have had together. However, we are grateful for the time they did have and the laughter they shared, she was definitely the light in Doug’s life! The pain we feel is tremendous but only a small fraction as compared to the pain that her parents and siblings must feel every second of every day!
    Iain, you have done a wonderful job of getting everything set up, especially her story and the pictures! She would be so proud of her little brother and her fiance working together to make her dream come true for creating a scholarship and sharing her message of support and encouragement to all the CF kids!
    Emily was an amazing young woman! She will never be forgotten, “Emily’s Light” will continue to shine through this foundation, thanks to all of you for your support and donations!

  3. Ian, you beautifully captured Emily’s story. Your sister would be so proud of you and Doug for following through on her vision for children with CF. Emily is truly an inspiration. Emily continuously set greater and greater goals for herself and accomplished them confidently, all the while prioritizing Doug, family, friends, and her animals. She never allowed her goals to get in the way of spending time with those she loved, and yet she accomplished more than most. She was incredibly loving, brilliant, beautiful, fun, playful, and full of life. Her enormous, beautiful smile was contagious and reflected her beautiful soul. Emily was a bright light and had a deep and lasting impact on all of us. I am very happy to contribute to this important cause.

  4. What a beautiful and amazing young woman! I pray that her light will continue to shine and be a positive path for other CF young people.

  5. I will nerver forget the first time I met her, Logan airport Boston 1994 was there when I first saw her smile. Took care of her and her brothers and I can’t believed what had happened. Missing you Emily.

  6. Beautiful lady and what a wonderful and inspiring person she was. Gives me such hope for my two year old grandson Miles that has cystic fibrosis. We have known since birth about his cf but still so much to learn to help him deal with cf. Praying for a cure. Thank you for doing this. You all will definitely change a life .

    • Donna, I hope Miles has a wonderful life ahead of him, despite the struggles he will face. Thank you for your comment.

  7. My name is Philip, I didn’t have the pleasure of meeting Emily, but I know what she went through and Doug as well. My fiancee recently passed due to a heart attack. She had CF and battled it until she passed. Doug I have every respect for you. Its good to know that there are others out there that are willing to stick with their love one through thick and thin. My condolences goes to the family and to Doug. May Emily rest in peace.

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