Thank you for visiting our website to watch the Celebration of Life for my daughter, Heather Madsen! Heather’s step-father, Lynn Jorde, wrote this beautiful tribute to Heather. We appreciate everything Lynn has done, and still does, for our family. Heather loved him dearly.
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.
Overcame Multiple Challenges
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.
Physical Limitations Didn’t Stop Heather
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, An Inspiring Writer
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.
Speaking Publically, Heather’s Passion!
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.
Grace and Courage Through Endometrial Cancer
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.
Love of Family
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; aunts and uncles, Kathy and Jim Cherrett, Shaun Lether, Shelli Lether, and Cloyd Hepworth; and maternal cousins. She is survived by her father, Terry Madsen; his wife, Lavonne; her grandmother, Jeanette Madsen; and paternal aunts, uncles, and cousins.
Heather Madsen’s Celebration of Life
A celebration of Heather’s life was held at Red Butte Garden in the fall of 2021 for her family and close friends.
Watch the full event here:
Thank you for watching Heather’s celebration of life and celebrating her extraordinary life with us!
Heather loved inspiring people and helping them through their challenges as much as she could through her writings and talks! I am helping her to continue doing this by sharing her writings and talks.
Enjoy having more experiences with Heather! Read her blog, listen to Heather’s talks on Debbie Jorde YouTube, visit her FB page where she posted inspiring writings, even as she was going through her final challenge of cancer.