Stories on Curt's Human Disease Website

Name of the Disease: Hemophilia

Author: Donald Colburn

Story Submitted February, 2000

City: Suffield, CT

AHF®, Inc.(American Homecare Federation,Inc.) was founded, and is

owned and directed by, Donald Colburn. Donald has severe factor VIII deficiency

hemophilia and many of its other complications. In addition, Donald has a

nephew and an 13 year old son both with severe factor VIII deficiency.

 

Often the lessons of a life for a man with hemophilia are passed on to his

nephews, nieces, daughters, and grandchildren. It is extremely rare that a

man living with hemophilia has the opportunity to raise a son who has

hemophilia as well. "Living with hemophilia, for me, has meant learning many

lessons. I've learned to live my life with the challenges of chronic illness,

to take pride in my accomplishments, and to venture forward in areas where my

strengths lie. For many of us born in the 1950s, the 'challenges' were

painful, frightening, isolating, and infuriating." Having survived his youth

and grown to adulthood, Donald Colburn is determined to make the struggle for

survival an easier one for others ... especially for children living with

bleeding disorders.

 

"I never expected I would have the opportunity to raise children of my own

and I shared many lessons with my nephew. I certainly never expected that I

would be raising a son with hemophilia." In September of 1996 that all

changed when Donald and his wife Kathy Keenan were able to adopt 10 year old

Miroslav. Miro, who has severe factor VIII deficiency, had lived from birth,

in an orphanage in Bulgaria. He had never known the love of parents, nor had

a home of his own and he was rarely able to obtain treatment.

 

He was ridiculed and isolated on account of his hemophilia. "With the same

determination that has guided our lives, we have been determined that Miro

would never again suffer the pain and isolation he knew during his first 10

years." Miro now has a family that is committed to him and to the thousands

of other children like him, worldwide.

 

It is this deep commitment that led Donald and Kathy to establish AHF®, Inc.

(American Homecare Federation Inc.) for the purpose of supplying life-giving

clotting factor medications to people with hemophilia and related bleeding

disorders.

 

"AHF®, Inc. was created as an alternative approach for families already

burdened with the challenges, anxieties, and deep concerns of managing a

chronic illness. The mission of AHF®, Inc. is to lighten a part of that

burden and take some of the worry out of obtaining affordable and dependable

home service for adults and children with bleeding disorders."

 

That same mission has led Donald to volunteer his time and energy as the

President of the New England Chapter of National Hemophilia Foundation (NHF)

(U.S.A.), as chair and member of over 10 national committees of the NHF,

including the committee raising money to find a cure. He has been a member

of numerous hemophilia-related US governmental task forces and committees.

Donald has spoken as an advocate for the bleeding disorders community before

United States governmental bodies and four committees of the World Federation

of Hemophilia (WFH).

 

As part of his ongoing commitment to the world community, the Donald and AHF

are participating in the WFH Operation Access programme by procuring and

delivering factor concentrate to Chile. Operation Access is a WFH programme

that brings together national healthcare systems, hemophilia organizations,

expert volunteers, medical establishments, and pharmaceutical companies. WFH

facilitates the programme in countries that pledge to improve their standard

of hemophilia care.

 

During the several years, AHF has contributed more than US $100,000 in staff

time and resources to ensure the continuing success of Operation Access in

Chile. The commitment to quality care, service, and support, demonstrated by

Donald Colburn's company and his family, is a model for many. Donald's

struggle to meet the challenges of living with hemophilia is also a model for

many living with this life-long disease.

 

This story is modified from an article that first appeared in "Hemophilia

World", December 1997, Volume 4, No. 4, published by the World Federation of

Hemophilia. For more information about the Operation Access Programme or

about the World Federation of Hemophilia, contact them at http://www.wfh.org.

For more information about Donald Colburn and AHF, contact us at

http://www.ahfinfo.com.