Hope For a Cure on the Horizon in Colorado - And the boy who started it
all. Meet Brady. A boy whose arrival in the world brought both the utmost joy but also heartache to his parents, Eileen and Chris Attar. Despite a healthy pregnancy, they immediately knew there was an issue when he was born with painful skin blisters, something they had never seen, nor heard of happening with a newborn baby. Their concern turned to devastation when they learned the blisters were a symptom of Epidermolysis bullosa (EB), which would manifest into much more than they could have ever imagined.
Children with EB are often referred to as “Butterfly Children” because their skin is as fragile as a butterfly's wings. The disease is also called by doctors and those in the EB community as “the worst disease you’ve never heard of.” EB is a very rare genetic disorder characterized by the formation of blisters and fragile skin that easily peels with minimal contact, heat, or friction, leading to the development of sores and heavy scar tissue. The underlying cause of EB lies in the absence of crucial proteins responsible for binding the skin's layers together. Without these proteins, the skin becomes prone to tearing, resulting in excruciating pain, disfigurement and
persistent wounds that struggle to heal.
Like a burn victim, individuals with severe EB (or Recessive Dystrophic EB) require extensive bandaging and wound care. For caretakers, like Brady’s parents, it can take 4 to 7 hours to change bandages every other day. Basic activities such as crawling or walking can cause further damage and intensify the already-present pain. In the United States alone, it is estimated that 25,000 to 50,000 families are grappling with the challenges of caring for a loved one with EB. The condition predominantly affects children, as the persistent inflammation resulting from the disease being internal and external can increase the risk of cancer significantly and cause malnourishment, reducing the life expectancy of individuals diagnosed with EB.
After Brady's EB diagnosis, his family embarked on a challenging path–embracing the task of understanding and managing the complexities of their son’s disorder. The overwhelming nature of their situation extended beyond the tasks of daily care, as they struggled to obtain necessary resources. Their health insurance company refused coverage for wound care supplies, which
were vital for Brady's survival and cost a staggering $8,000 per month at the time. They realized that the rarity of EB meant that raising funds and awareness was necessary to access exceptional care for children like Brady. As of now, there are no known treatments or cures for EB, leaving kids living with this condition and their families with limited options.
However, Brady is so much more than just his EB diagnosis. Those who know him, his family, and many other children suffering from this disease, discover something remarkable. These childrens’ stories are actually a tale of hope in the face of unimaginable adversity. An embodiment of the unbreakable human spirit, his unwavering optimism and passion for life serve as a light that shines on the truth that a cure is being developed right here in Colorado.
The Attar family was determined to alleviate Brady's daily suffering. In their pursuit of the best possible care, they relocated from Texas to Colorado, seeking the expertise from the Gates Center for Regenerative Medicine and the Children's Hospital Colorado EB Center of Excellence led by Dr. Anna Bruckner and her team, where they offer specialized care and treatment for EB children. Feeling hopeful for the first time in a while, The Attars chose Colorado
as their permanent home and began to focus on working with the clinic to educate them on caring for a child with EB. The Gates Center is at the forefront of Epidermolysis Bullosa exploration where their stem cell research has made tremendous strides. Through their integration of scientific research, treatment development and clinical knowledge, they distinguish themselves far above other healthcare institutions in the EB community. The groundbreaking work done in Colorado brings hope and advancements towards a cure to individuals and families affected by this challenging condition. Their team has even gone so far as to say, “An actual cure is on the horizon!”
Colorado is also home to one of the largest outdoor programs for EB kids: Camp Spirit. Attending this camp is sometimes the very first time these kids have ever been away from their parents. Taking place in Winter Park every year, Camp Spirit serves as a haven of fun and learning. It provides an opportunity to socialize with other kids their age, with the same condition. While at the camp, these children have the ability to look at the world through a colorful lens of joy, laughter and a sense of play. While many of us would collapse under the weight of this disease, these children’s pain tolerances are so strong, some actually see their disease as a superpower. Their resilience is evident when watching them thrive during countless camp activities in the snow. Camp Spirit’s incredible team of volunteer doctors allows
campers to enjoy new experiences they once thought to be impossible- Granting them the freedom to just be kids!
“When my nephew William (The Boy Who Started It All) was born with the disease in 2010 my heart sank as I Googled the disease and watched the many online videos - says Larina McClain, Founder of Birdies for Butterflies in Colorado. As William grew older my perspective changed drastically as I began to witness William's extreme passion for life and his will to not only live, but to thrive, in spite of his suffering. Like Brady, William has been on a mission of
changing people's lives for the better. “We watched them play and learned their stories and our lives were never the same!”
"Since William's journey began," says McClain, "I've had the pleasure of meeting some of the most wonderful people in the EB community including Brady’s lovely family, the Attar’s, who were our guests of honor at our last event”. Birdies for Butterflies is a Colorado-inspired biennial event where we make ‘Birdies’ on the golf course in a competitive golf tournament to support
‘Butterflies,’ or butterfly children, as we hope to bring them a little joy in spite of their suffering.
About the Event and How you can Get Involved:
Visit www.BirdiesforButterflies.com
When: September 11th 2023
Where: The Club at Ravenna
Supporting: The Butterfly Family Fund and the Colorado Children's Hospital EB clinic