After meeting with many doctors and experts, we believe it was Amanda's immune response that actually killed her.
During the past year, we have learned that such reactions to infections are more common than most people realize and that this response is known as septic shock. Although most people have heard the phrase 'septic shock', few understand what it is: Septic shock occurs when the body's own immune system goes into overdrive in response to an infection, virus or trauma, setting off a cascade of events that can lead to widespread inflammation, injury to various organs and ultimately, a failure of the cardiovascular system.
- Severe sepsis and septic shock account for approximately 4,200 childhood deaths per year in the U.S. - over 50% of whom had no long-term illnesses and were considered otherwise healthy prior to these reactions.
- There are over 300,000 adult deaths per year in the U.S. due to severe sepsis and septic shock -- it is the #1 cause of non-cardiac deaths in Emergency Rooms in the U.S.
- There are no other foundations that focus on this important threat to the health of children, nor on sepsis and septic shock in general!
The reasons why some children have this abnormal response to infections are not well understood. This is an underfunded area for cutting-edge research. Accordingly, we are supporting immunological and genomic research to identify high risk children, including the following initiatives:
- Hector Wong, M.D. - Cincinnati Children's Hospital Medical Center
Dr. Wong is performing a genomic analysis of children admitted to the Emergency Rooms at 15 hospitals across the country. He and his colleagues are mapping out the 33,000+ genes in each individual's RNA to identify similarities in children who progress into the most severe stages of septic shock, including death. Identification of such genetic markers are critical in order to develop effective treatments and determine which other children should be considered high-risk for such extreme reactions.
- Rick Bucala, M.D. - Yale University School of Medicine
Dr. Bucala has done extensive work focusing on the macrophage migration inhibitory factor (MIF) gene, which has a critical influence upon the severity of numerous immunological diseases and the immune reactions to those diseases. This gene will now be studied to determine whether it can be used to predict the severity of reactions to respiratory infections/viruses in children.
- Meredith Heltzer, M.D. - Children's Hospital of Philadelphia
Dr. Heltzer will be evaluating pediatric patients hospitalized with complicated influenza to determine whether any characteristics of their immune response differ from patients with less severe viral infections. She will be examining the responses of T cells and inflammatory hormones called cytokines to determine if the uncontrolled production of cytokines leads to severe complications including septic shock and encephalitis in patients with severe influenza infection. She will also be taking family medical histories in order to determine if there are any similarities across patients with the most severe reactions.
Flu Vaccine Recommendation Changed by the Advisory Committee on Immunization Practices (ACIP)
The ACIP sets immunization policies for all vaccines on behalf of the CDC.
In February 2006, the ACIP expanded the Influenza Vaccine age recommendation to cover children up to age 5. According to many policy makers who voted on this initiative, this ‘recommendation’ was not even on the agenda for a vote at that time and would not have gone through without our personal impassioned speech immediately before the vote.
Since most pediatricians follow these CDC recommendations, millions of children will now be protected against Influenza. In addition to saving the lives of these children, this could also prevent thousands of deaths among adults since sick children often spread Influenza to family members, including the elderly who are particularly vulnerable to complications from the flu.
This policy change was widely covered by the media in hundreds of newspapers and news programs:
Families Fighting Flu
During the summer of 2004, we helped to establish Families Fighting Flu, a coalition of families whose children who have suffered extreme reactions to Influenza. The group's mission is to increase awareness of the risks of flu and encourage vaccination for all children. A secondary mission is to provide a place for families to turn following the loss of a child to the flu.
As part of this initiative, we are the focus of a Public Service TV commercial. In addition, Richard has served as President since June, 2005 and has served as a key spokesperson for the organization. For more information or to view the commercial, visit www.familiesfightingflu.org.
Good Morning America
On January 19, 2006 we appeared in an extended segment on GMA, “Families Want Flu Guidelines Changed After Childrenís Deaths”. To view, click here.
Big Apple Parent Magazine
Amanda's story appeared in the September, 2004 issue of Big Apple Parent. To view, click here.
Interactive Dad Magazine
On January 25, 2006 Amandaís story appeared on Interactive Dad Magazine, based on an interview with Richard. To view, click here.
Advisory Committee on Immunization Practices (ACIP)
The ACIP meets three times/year. We have attended 3 sessions to date and spoke at the October 2004 and February 2006 sessions. We plan to attend the October 2006 session, as well as any future sessions in which Influenza will be discussed.
Faces of Influenza campaign
During Fall 2006, we will be participating in the American Lung Associationís “Faces of Influenza” campaign to increase awareness of the risks of influenza and encourage vaccination.