Heather Rae Madsen was a native to SLC, Utah. She was born on Feb 22, 1977 and lived an inspiring life until July 23, 2021. Heather's motto in life was "Choose Love."

Heather Madsen's life was both unusual and extraordinary. It was unusual because she faced many physical challenges. It was extraordinary because, in spite of those challenges, she achieved so very much.

Heather was born with two rare genetic disorders, Miller syndrome and primary ciliary dyskinesia. Later in life, she was diagnosed with autism spectrum disorder. She endured more than 25 major surgeries, and she survived several near-fatal medical emergencies. But these challenges did not define her, nor did she indulge in self-pity or resentment. She was a woman who courageously embraced each moment of her life and treated it as the gift she believed it to be.

Although Heather's physical body imposed many limitations, her spirit was indomitable. Despite having very short arms, no wrist mobility, and only four fingers on each hand, she learned to play the piano. She learned to juggle. She proudly earned a Bachelor of Science degree in psychology from the University of Utah. In 2009, she, her brother Logan, and her parents became the first family in the world to undergo sequencing of their entire genomes, putting a book mark in history. Heather assisted in an award-winning documentary film about her brother, called Logan's Syndrome. She and her brother shared a close relationship built on unconditional love and common experiences from having the same disabilities.

Heather read voraciously, and she enjoyed discussing what she learned with friends and family. She wrote beautiful, insightful essays and poems, many of which have been published in her mother's memoir, Eight Fingers and Eight Toes: Accepting Life's Challenges, and in her blog at DebbieJorde.com. Focusing on details that highlight the beauty in the ordinary, Heather's writings create gratitude for everything in life, even the struggles. Her prose and poetry shed light on the meaning of life, relationships, diversity, acceptance, and unconditional love. They take the reader on a journey through emotions that connect us all, the struggles and joys we all share, and the oneness of life.

Each year, Heather summoned the courage to appear before 125 first-year medical students at the University of Utah School of Medicine to share her remarkable story. She enthralled and inspired thousands of students in the way only she could. One student recently commented, "It has been such a privilege to meet you and hear your story. There are very few people that can come into this world and use their own light to brighten the light of others. You have made the world better just by being you! Every year you inspire a class of medical students to go out and care more, love more, and try harder. Thank you for all that you do and the positivity that you share!" Heather always wanted to make a difference, and she succeeded admirably.

Earlier this year, Heather was diagnosed with metastatic endometrial cancer. Through her grace and courage, she was an inspiration to all who met her during her final struggle. She never failed to say "thank you," and she always shared her big, beautiful smile. Heather did not fear death. She looked forward to her journey to the "other side," where her pain will finally be gone, and where her sweet, pure soul will soar freely and forever.

The most important thing in Heather's life was her family. She is survived by her loving mother, Debbie Jorde; her brother, Logan Madsen; her step-father, Lynn Jorde; her aunts and uncles, Kathy and Jim Cherrett, Shaun Lether, Shelli Lether, and Cloyd Hepworth; and her maternal cousins. She is survived by her father, Terry Madsen; his wife, Lavonne; her grandmother, Jeanette Madsen; and paternal aunts, uncles, and cousins.

We extend sincere gratitude to the many University of Utah health care professionals who helped Heather throughout her life. A celebration of Heather's life will be held at Red Butte Garden in the fall for her family and close friends.

In memory of Heather's remarkable life, please donate to the Foundation for Nager and Miller Syndrome, FNMS. https://www.fnms.org/

Learn more about Heather and her family at: https://www.debbiejorde.com/about-hea...
Read Heather's writings on her blog: https://www.debbiejorde.com/category/...
Visit Heather's FB page:   / heatherrmadsen  
Read Heather's story in her mother's memoir: https://www.debbiejorde.com/eight-fin...

Find inspiring talks by Heather on Debbie Jorde YouTube