Washington, DC: Imagine having the opportunity to visit the Oval Office and meet the President of the United States. This opportunity became a reality for 12-year old Emmanuel Forbes with severe hemophilia complicated by an inhibitor, his five siblings and parents, Michael and Jane Forbes. Emmanuel was granted his wish through the Make-A-Wish Foundation. The Foundation “grants the wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength and joy.” The entire family travelled from Upland, California to Washington, DC to meet the President on September 14, 2009.
It is not every day a family from the bleeding disorders community gets a “sit down” meeting with the President. Katie Whittle, HFA’s VOICES Campaign Coordinator had an opportunity to capture the Forbes’ sentiments prior to their meeting in the Oval Office. Jane Forbes, a Registered Nurse, is thankful the President is addressing the health care system in America. She wants the President to understand the challenges “uninsurable” families face because of the broken health care system. Jane and Michael appreciate that the President recognizes there is an issue, but important issues such as insurance reform, are still very unclear to families across the country.
The children, Raphael, Gabriel, Michael, Emmanuel, Rachel and Ariel, expressed gratitude and were excited for such a rare opportunity. Twelve-year-old Emmanuel wanted to tell the President “he is a really good leader and he is cool.” Ten-year-old Ariel told Katie she just wants to ask the President if she can have a play date with his daughters. The kids were thrilled about the opportunity to meet and play with “Bo,” the President’s dog.
Their trip to Washington, DC did not end at the Oval Office. The Forbes family took the time to visit their legislators too. A meeting with Senator Barbara Boxer and Congressman David Dreier was invaluable to the Forbes family. Michael and Jane had the chance to educate both members on hemophilia and the kids were excited about playing the pinball machine in the Congressman’s office at the Capitol.
The opportunity to meet the President, Senator Boxer, and Congressman Dreier was a unique experience, but the Forbes’ are no strangers to sharing and collecting stories. Michael and Jane Forbes have been active in the hemophilia community for many years. Five of their children have hemophilia and two of the five have inhibitors. Both have researched and collected stories from hundreds of families with hemophilia and other rare disorders. Their research culminated in the publication of a book entitled “Surviving the American Medical System in the 21st Century,” which Emmanuel shared with the President and both members of Congress.
Towards the end of their eventful meeting, the President thanked Emmanuel for a copy of the book and thanked the family for sharing their story. The President concluded by saying “We are trying to help families just like yours.” The Forbes left feeling assured the President is trying to help families challenged by the health care system.
The bleeding disorders community has an opportunity to have their wishes granted. The Forbes had a rare opportunity to meet the President but more importantly, they had a chance to share their story. Mike, Jane and their children, like many other families, just want the President and Congress to appreciate what families with rare, chronic disorders must face.
Help the Forbes’ by expressing your health care challenges and the need for reform that families understand. Do not miss this opportunity for your wish to be granted!
For more information about your opportunity to be HEARD, contact HFA and share your VOICE.
The Hemophilia Federation of America is a national 501(c)(3) organization consisting of 30 member organizations and numerous individual members who offer assistance and grassroots advocacy on behalf of the bleeding disorders community. Incorporated in 1994, the HFA provides programs and services to improve the quality of life for persons with hemophilia and von Willebrand disease (VWD).
For more information, visit our website at www.hemophiliafed.org or call 1-800-230-9797.
HFA CONTACT: Kisa Carter, HFA Public Policy Director | 202.675.6984| firstname.lastname@example.org