World Rare Disease Day: A Musical Celebration at the Children’s Hospital of Wisconsin
February 2, 2020Harmony 4 Hope and Orchard Therapeutics Band Together to Rock Rare Rare Disease
June 1, 2020
Harmony 4 Hope (H4H) is a nonprofit dedicated to using music as a vehicle to drive advocacy, education, and research of rare diseases. There are more than 7,000 known rare diseases that collectively affect 350 million people around the world – half of those people are children. Using music and storytelling, H4H uplifts patients and their families.
During the month of February, H4H is partnering with the Children’s Hospital of Wisconsin to bring stories of hope and songs of courage to CHW. All month long, patients, staff, and visitors can visit the Lower Level Gallery to learn more about rare disease and be inspired by the power of music thanks to some of the awesome H4H Rare Storytellers who have been patients at CHW.
As we approach World Rare Disease day at the end of the month, we invite you to walk the way with patients and learn more about Rare Diseases and the H4H mission to Rock Rare. Please take time to visit our installment in the Lower Level Gallery—you can even see some of the highlights below.
If you want to contribute to the H4H beat, please consider donating to our mission today.
“When you are living with rare disease there is inevitably a degree of isolation. Filling the room with music to match your mood can be emotional and empowering. Through music we connect in our weakest and most exciting moments.” – Jessica Ceisel, Mother of Makayla
At age 3, Makayla stopped growing and got very sick. A year later she was diagnosed with Celiac Disease. Not long after, new symptoms surfaced.
Makayla was diagnosed with a genetic disease that affects the lungs, sinuses and reproductive tract. It is a progressive disease that impacts her daily life.
She has also been diagnosed with another rare disease that made her vomit every 20 minutes.
Now 9 years old and healthier, Makayla inspires her family and friends by often challenging her limitations and pushing her body. She stays healthy by keeping active with friends, playing lacrosse and dancing every chance she gets.
“With limitations placed on my physical activities my whole life, activities like marching band and wind ensemble gave me the chance to be a part of a team in a different way. I wouldn’t be the person I am today if I didn’t have music in my life.”
Isabelle “Belle” was diagnosed with Marfan Syndrome and Loeys-Dietz Syndrome. As a child, she had open-heart surgery in July of 2017. Despite her difficult medical journey early in life, Belle – now a 21-year-old college student at Carroll University in Waukesha – sees herself as a normal, young adult who loves hiking with her dogs (Elsa, Hedwig, and Chip), running, horseback riding, reading, and writing poetry.
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“Music is my escape; it’s where I go to understand and express my feelings when things are difficult. Music is also a way I can inspire others to be brave and never give up.”
Claire was born with a rare genetic kidney and liver disease. Nearly half of those born with this condition don’t survive the first few months of life.
Claire was also born with a cleft lip and palate. When she was nine years old, she received a living donor kidney transplant.
Claire now gives inspirational talks, sharing her story and promoting rare disease research. She is a freshman at Carthage College studying communications, music, and creative writing.
“The music we listen to can express some of the battles we go through, and in turn, we can share it with others who struggle with the same battle, and hope that they might feel a similar connection.”
When Taylor was 18, she couldn’t stop vomiting and was losing weight. Taylor was diagnosed with a very rare disease.
Now 20 years old, Taylor is a nursing student at Carroll University. She is very active in the community, serving on the Children’s Family Advisory Committee, and is dedicated to educating the medical community on rare diseases. In her free time you can find her with family and friends, watching sports, or baking.
“Whether through singing, dancing, eye movements, or expressing in other ways, music has an ability to transcend all communication methods and bring out joy in so many unique ways!”– Ryan Freund, Father of Adair
Early on, Adair was diagnosed with a genetic disorder. She has had many serious surgeries and difficult recoveries.
Now five years old, Adair has made incredible strides: she started walking by herself, talking more, and she’s achieving developmental milestones.
“A really important part of music is the escapism it can give people. When you’re struggling with something…if you can transport yourself in a melody it can take you somewhere else.”
As a Musical Ambassador for Harmony 4 Hope, Trapper Schoepp merges his storytelling, musicianship, and his own diagnosis with chronic back pain.
Trapper has earned acclaim as one of America’s most gifted new singer-songwriters. His latest album PRIMETIME ILLUSIONS was released in 2019.
For more information on Trapper Schoepp visit: http://www.trapperschoepp.com.
Special Thanks to Our Partners
Harmony 4 Hope (H4H) is a nonprofit charity organization founded by Marquette alumna, Kerry Morgan Hughes (Arts ’93). Harnessing the power of music the mission of H4H is to fuel scientific discoveries in Rare Disease, educate future physicians and healthcare providers and uplift affected children with gifts of music and music therapy. Learn more at harmony4hope.org.
Tweet Song Requests for the H4H Rare Disease Day Playlist 2020 @harmonize4hope using #PlayThisFWD! Theme: Songs of Courage.