Children ages 5 to 21
Other Named Groups
Living with a bleeding disorder-an early and sometimes shocking diagnosis, with frequent and demanding treatment, and the likelihood of complications-can alter the experience of childhood and young adulthood. Aside from their physicians, families, and caregivers, children in Colorado affected by bleeding disorders depend on NHF Colorado for information regarding how to manage their health and lead productive lives.
Mile High Camp fills a void in their health management that not only addresses their physical health, but also provides insights into many of the social and emotional issues that are involved in having a chronic illness as a child, and having to then grow with that illness and transition into a functioning adult. Thus, Camp is a vital resource for these kids as they move from being cared for to being responsible for their own physical, educational, and social needs.
Mile High Camp is a summer camp in a physically safe and medically sound environment for children ages seven to 18 affected by an inherited bleeding disorder such as hemophilia, von Willebrand disease (vWD), and other clotting deficiencies. As they participate in the activities and wilderness experiences, children learn to overcome limitations and build self-esteem. The six-day overnight camp gives them many opportunities to bond with their peers and practice teamwork. The philosophy is to provide traditional camping activities in a safe environment.
For most participants, it is their first true summer camp experience. Mile High Camp for ages 7 - 10 is hosted at Rocky Mountain Village, the Easter Seals camp in Empire, Colorado, a facility specializing in children and adults with special needs. For ages 11 - 13, it is hosted at Breckenridge Outdoor Education Center. Mile High Camp also offers Leaders in Training, a program for ages 14 - 18. The program promotes leadership and encourages participants to become Camp counselors, growing the Camp's volunteer base.
For most campers, Mile High Camp is their only opportunity to meet peers who also have a bleeding disorder. Camp is that special place where they can discuss their fears and know that there are others close by that are able to listen and that do understand. They are able to stay in touch with these other youth throughout the year through social media, educational sessions, picnics, and youth meetings.
A chronic condition affects the entire family, so siblings are invited to attend as well. Camp provides a great opportunity for siblings and other children from this unique community to learn more about bleeding disorders, how to help, and how to engage in their sibling's struggles.
In 2016, a record high 106 campers attended Mile High Camp. The crucial benchmark is adherence to clinical care. In partnership with the University of Colorado Hemophilia and Thrombosis Center, data is collected from annual comprehensive visits on prophylaxis adherence, log entries on bleeds, and a general determination to take on self-care through a psychosocial exam. Those who have gone to camp are 61% more likely to adhere to prophylaxis. Kids who attend camp also show high scores on personal knowledge of bleeding disorder (4.3/5) and personal self-infusion (4.6/5).
Mile High Camp had an 87% retention rate from 2014 to 2015, and many who participate in the teenage leadership program show interest in volunteering at the Chapter level.
Campers also display improvement in socialization, as evidenced by a 25% increase in teen campers participating in community activities in the past two years. Post camp surveys show improvement in compliance, dialogue, and independence, as well as a decreased sense of isolation, depression, and anger towards self.
Children and Youth (infants - 19 years)
Other Named Groups
Bleeding disorders are life-threatening, debilitating, and expensive to treat. A child with severe Hemophilia will spend over $200,000 annually to prevent bleeding. Some children and adults build up inhibitors to the treatment and the costs can exceed $1,000,000 per year. Failure to preventatively treat the disorder can result in prolonged painful bleeds that cause permanent and severe damage. Access to affordable and adequate health care is critical to being a self-sufficient, contributing member of society.
The entire family is affected by the bleeding disorder physically, emotionally, and financially. With over 35 years of experience, we provide programs and services to people affected by bleeding disorders so that they can better cope and can become self-advocates for themselves and/or their family. We partner with the University of Colorado Hemophilia Treatment Center, other agencies, and medical professionals to provide programs and services unique to those with bleeding disorders to best meet their needs.
NHF Colorado provides an array of programs for individuals and families living with bleeding disorders, including Hemophilia, von Willebrand disease (vWD), and other clotting deficiencies. Current NHF Colorado programs include:
• Academic Scholarship Program.
• Advocacy Programs. NHF Colorado is committed to involving the bleeding disorders community with advocacy at both the state and national level.
• Backpacks & Bleeders. Participants hike, indoor rock climb, snowshoe, and even attempt 14er's (for the most experienced hikers) in a safe, monitored environment.
• Connections. A program designed to educate and support people at the time they receive a Hemophilia diagnosis or another bleeding disorder and patients who are hospitalized due to bleeding disorders. It is coordinated with the local Hemophilia and Thrombosis Center (HTC) at University of Colorado, utilizing HTC social workers to identify new families, hand out welcome packets and take-care kits to those hospitalized, and offer connection to the chapter. NHF CO then cultivates a relationship with each new family, providing specific programming and connecting then with mentor families when applicable.
• Educational Programs. Continuous education for the latest treatments, drug information, and care of bleeding disorders.
• Financial Assistance. Most bleeding disorders can be managed with proper medication. However, the cost of that medication, in addition to treatments and surgeries, can put an extreme strain on family finances. NHF Colorado provides financial support, based on availability of funding, to help pay for:
- Expenses incurred in the care, treatment, or prevention of a bleeding disorder
- Health insurance premiums
- Funeral expenses
- Emergency transportation services to HTCs
- Basic living expense emergencies
• Hispanic & Latino Programming
• Family Camp
In 2015, NHF Colorado served a total of 698 individuals and their families throughout the state.