Children's Hospital Colorado Patient Battling Rare Disease Gets Support from Local Musicians
patient Emma Stenzel,
10, enjoying a nice
Emma Stenzel is an active and happy 10-year-old. She loves riding horses, playing piano and listening to music. A patient at Children’s Colorado, Emma has been coming to our infusion clinic for the past five years and is proud that she knows her way around our big hospital.
It all started with a rash
On January 1, 2008, Emma woke up with a distinct rash on her face. Her pediatrician said it was eczema and advised her to put lotion on it. But within weeks, the rash worsened, appearing on Emma's hands, elbows and knees. By February, she complained that her legs "hurt", she seemed overly fatigued, and the rash looked worse. Two weeks later, Emma couldn't even lift her hands over her head, dress herself, or get up off the floor.
Children's Colorado doctors diagnose Emma with an autoimmune disease
On February 13, 2008, Children's Colorado doctors diagnosed Emma with juvenile dermatomyositis (JM), a rare autoimmune disease that attacks children of all ages, causing a variety of debilitating symptoms, including:
- Muscle weakness and pain
- Severe fatigue
- Swallowing and digestive difficulties
- Lung and heart problems
- Vasculitic ulcers (caused by inflamed blood vessels, which can occur anywhere on the body)
Medication can help alleviate symptoms of JM, but there is no known cure. Some children may experience remission (a period of time when symptoms decline or go away), while others will battle the disease their entire life with complications that can be fatal.
For Emma, it took more than four years and countless infusions of drugs to get the disease under control. She also spent a year doing daily physical and occupational therapy to build her strength.
Despite doing well for several years, Emma recently experienced a "flare up" of symptoms that require more tests and treatments. To help garner support for Emma's condition and more than 17,000 kids around the world living with JM, the Stenzel family and a local music group partnered to raise funds and spread awareness.
Music inspires hope for a cure
Olivia Lewis, 13, from
England won the JM
album art contest.
"G.I. and Jo," also known as Stephan Hoff and Joellen Cabot, are close friends of the Stenzel family and watched their struggles over the past several years. Emma's battle with JM inspired them to write "Can't Stop the Rain," a touching song about dealing with a chronic illness without a cure in sight. Download the "Can't Stop the Rain" song to show your support for children living with JM.
The band and the Stenzel family also co-hosted an art contest for kids living with JM that challenged them to design "cover art" for the song. After tallying thousands of votes from around the world, Olivia Lewis, age 13, from Framlingham, England, won the contest.
Proceeds from the song benefit the Cure JM Foundation
Members of the band G.I. and Jo decided to donate all revenue from downloads of "Can't Stop the Rain" to the Cure JM Foundation. For just 99 cents, each song download helps get Emma and other kids who struggle with JM closer to a cure. The family and the band decided to fight the disease with music and art to give hope to Emma and other kids that struggle with the disease on a daily basis.
When asked about her struggles, Emma sums it up by saying, "JM is strong…but I am stronger."
To learn more about current JM community updates, visit the "99 cents closer to a cure for JM" Facebook page.
Watch how hope was created from art in the JM album contest