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LINDSEY’S STORY

DIAGNOSIS: FANCONI ANEMIA

I always dreamed of having my own family…

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I was going to have 4 kids, but 2 of them would be adopted. I don't know if it's going to happen now.

LINDSEY'S STORY

I was going to have 4 kids, but 2 of them would be adopted. I don’t know if it’s going to happen now.
Today I feel worried. I went to the cardiologist. In a nutshell, my lungs are running at half capacity on both sides. It’s scary and I’m uncomfortable

CONCERNS

Today I feel worried. I went to the cardiologist. In a nutshell, my lungs are running at half capacity on both sides. It’s scary and I’m uncomfortable
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There is a water slide I recall from many years ago. It goes very fast. I loved the feeling of the speeding water and rush of adrenaline. I can’t bend my knees.

DREAMING

There is a water slide I recall from many years ago. It goes very fast. I loved the feeling of the speeding water and rush of adrenaline. I can’t bend my knees.
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Every time I try physical therapy, the swelling gets worse. I’m growing more and more dependent on my parents…

STILLNESS

Every time I try physical therapy, the swelling gets worse. I’m growing more and more dependent on my parents…
Today we had the conversation about comfort measures only. As I was about to decide, the swelling started to improve. It’s really a hard decision.

COMFORT MEASURES ONLY

Today we had the conversation about comfort measures only. As I was about to decide, the swelling started to improve. It’s really a hard decision.
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"I have an incredible way of bouncing back.:" --- Fanconi anemia is an inherited disease that can lead to bone marrow failure and cancer. Though considered primarily a blood disease, FA may affect all systems of the body. It is a complex and chronic disorder that is psychologically demanding. FA is also a cancer-prone disease, affecting patients decades earlier than the general population. (Source: fanconi.org ) Lindsey and her family fought her rare disease every day. She always spoke of the good in life and the small moments that mattered. For additional information on Fanconi Anemia: www.fanconi.org

I'M STILL HERE

“I have an incredible way of bouncing back.:” — Fanconi anemia is an inherited disease that can lead to bone marrow failure and cancer. Though considered primarily a blood disease, FA may affect all systems of the body. It is a complex and chronic disorder that is psychologically demanding. FA is also a cancer-prone disease, affecting patients decades earlier than the general population. (Source: fanconi.org ) Lindsey and her family fought her rare disease every day. She always spoke of the good in life and the small moments that mattered. For additional information on Fanconi Anemia: www.fanconi.org

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(C) Jeffrey Teitler, 2021
https://www.envisionfilms.org
© Hospital Llves 2021 - Jeff Teitler - EnvisionFilms.org
Developed through collaborations with Hartford Healthcare, UConn Health, Saint Francis Hospital and Medical Center - Produced by Envision Films, Jeffrey Teitler, Medscape, Eugenia Yun, Lauri Graham, Gabriel Miller, Anya Romanowski and Peter Knox, Jr.with special thanks to Rebecca Stewart, Nick Dethlefsen, Jeffrey Flaks, Jennifer Huber, Derek Slap, John Rodis, MD, Ron Kowalczyck, F. Perry Wilson, MD, Niamey Wilson, MD. Nancy Rousseau, Steve Wolf, MD, Patti LaMonica, Kelly Chevalier, David Shapiro, MD, Bill Marshall, MD, Dr. James Feeny, MD and Elizabeth Krafcik