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Butterfly Children Fund Corp.

$1,224.72

EB is a genetic disease which is often called, “The worst disease you have never heard of”. Children with EB do not have the collagen/protein which binds the layers of skin together, resulting in a lifetime of sores, pain, disfigurement and physical limitations. They are referred to as “Butterfly Children” because their skin is as sensitive as butterfly wings. It is a rare disease, affecting approximately 200 babies each year. Even though they have a shortened lifespan filled with pain, children with EB have an indomitable spirit. The Butterfly Children Fund is dedicated to improving their lives through insuring they have their medical, physical and life needs met, and through giving them the amazing experience of Camp Spirit. Our team has been fundraising for the Epidermolysis Bullosa (EB) Family Assistance Fund, Endowment Fund, and Camp Spirit through the Children’s Hospital Colorado Foundation for many years. In 2016 we formed the non-profit Butterfly Children Fund Corp. to enable us to expand our fundraising abilities.

Epidermolysis Bullosa is a very expensive disease. It requires specialized dressings, power mobility such as wheelchairs and scooters and frequent hospitalizations. Daily constant care consists of baths and dressing changes, tube feeds, medications, monitoring by Physical and Occupational Therapy, a nutritionist, frequent transfusions to counter anemia, and many other interventions. Because it effects all epithelium, external and internal, the children need frequent dilations of their esophagus because of scarring and encounter frequent corneal abrasions. Often one parent cannot work, because of the amount of care involved. The funding of the EB Family Assistance Fund is so important to help meet these needs as well as the flights and lodging needs for out of state patients who come to the Children’s Hospital Colorado Clinic.

Camp Spirit was started in 2008 to give children with Recessive Dystrophic EB (one of the worst forms) the experience of winter activities in a safe environment and the opportunity to be around other children like them. The Butterfly Children Fund is the sole fund raising source for the camp. We feel that the experiences gained here have a life long impact on the children encouraging independence, advocacy, and the realization that their disease does not have to preclude fun and adventure.

  • Address:

    2429 Bitterroot Lane, Golden CO 80401

  • Phone:

    (303) 877-3935

  • Website:

    http://www.butterflychildrenfund.org

  • Year Founded:

    2016

  • EIN (Federal Tax ID Number):

    812541996

  • Mission Statement:

    To improve the lives of children with Epidermolysis Bullosa by providing funds to help families with life and medical needs to covered by insurance, and by funding Camp Spirit, the Winter Adventure Camp for Children with EB.

“The EBFAF, directly supported by the Butterfly Children Fund Corp. and makes a tremendous difference in the daily lives of our patients and their families. The fund improves our patient’s quality of life by helping cover expenses not reimbursed by insurance (including emergency funds for dressings, travel and lodging for out of town patients, specialized power equipment, school supplies, and many other needs. A few specific examples of the many ways the fund impacted more than 15 families this past year include: Purchase of an adaptive bike, paying for plumbing needed to install a walk-in-bath (which was life-changing for this child’s skin and wound care), and tuition support for a parent to train as the child’s CNA (this family now has a stable source of income from this parent). The Butterfly Children Fund (BCF) has been nothing short of life-changing for many of our patients and their families. Thank you Butterfly Children Fund.”
James Feinstein, MD, MPH

- The The EB Family Assistance Fund (EBFAF)

“This was a life-changing experience for me.” Tony (Camper)

“I have never ever had so much fun. I didn’t know this was possible.” Henry (Camper

“I never learned I could change my own dressings before coming to camp. It has taught me so much.” Ariana (Camper

“Here the campers learn to advocate for themselves and become so much more independent and confident.” Danielle RN (camp nurse)

- Camp Spirit Colorado

  • Program Name:

    Camp Spirit Colorado

  • Program Description:

    Camp Spirit was started in 2008 to give children with one of the most severe forms of EB a chance to; experience winter sports in a safe environment, promote independence and empowerment, and enjoy camaraderie with other children with their diagnosis. The Butterfly Children Fund provides the money to keep Camp Spirit running year after year. It has been instrumental in inspiring children with EB to move beyond their comfort zone, to try new activities and even think about othre life possibilities like college. This is the only Winter Adventure Camp for children with EB in the nation and attracts campers from throughout the country.

  • Beneficiaries:

    Children with EB from around the nation.

  • Budget:

    15000

  • Success Story:

    Camp Spirit is recognized as the only Winter Camp for children with EB. It has been successful in inspiring the campers since its inception. This will be the 12th year of operation.

  • Program Name:

    The EB Family Assistance Fund

  • Program Description:

    Since EB is such an expensive disease, a fund was established for the Children's Hospital Colorado EB Clinic to assist families with unfunded critical medical and life expenses. The Butterfly Children Fund is the sole source of money to support the fund. This clinic is one of only a few in the nation with the expertise to treat children with EB. For that reason families come from several surrounding states to be monitored and treated here. The financial needs have been escalating every year so the need to raise more each year is daunting. We have been successful , but it is one reason the non-profit was started so we can expand our fundraising efforts.

  • Beneficiaries:

    Children and families from several states dealing with the unexpected expenses not covered by insurance.

  • Budget:

    25000

  • Success Story:

    The Family Assistance Fund was started in the early 2000's, with a budget of approximately $5,000. Because of the added demands in subsequent years, the formation of the BCF was integral in meeting these current expanded needs, The Butterfly Children Fund has been meeting the needs of the families successfully since its inception.

  • Program Name:

    The Beall Family EB Endowment Fund

  • Program Description:

    This fund resides in the Children's Hospital Colorado Foundation and was started 4 years ago to provide a consistent source of funds for the Family Assistance Fund and Camp Spirit. It is now valued over $300,000 providing approximately $15,000 a year to the Family Assistance Fund. Our goal is to raise $1,000,000 which will insure there will always be funding for the camp and families. After donating the necessary funds raised each year to the two main beneficiaries, any left over funds are given to the Endowment.

  • Beneficiaries:

    Camp Spirit and the Family Assistance Fund

  • Budget:

    15000

  • Success Story:

    We are a small group involved in the non-profit and are very excited that we have been able to expand the Endowment to approximately $320,000 in 4 years.

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