Supporting the Goals and Ideals of National Eosinophil Awareness Week

Floor Speech

SUPPORTING THE GOALS AND IDEALS OF NATIONAL EOSINOPHIL AWARENESS WEEK -- (House of Representatives - May 15, 2007)

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Mr. LARSON of Connecticut. Mr. Speaker, I thank the gentlewoman from California for yielding but also for her continued outstanding service in the United States Congress and bringing the knowledge of her profession and her expertise to this body on a regular basis and especially the compassion that's needed for so many of those who suffer from eosinophilic disorder, more than 50,000 in this Nation.

I want to applaud my colleague from North Carolina, also, Representative Myrick, for her cosponsoring this legislation and understanding as well the importance that this has for so many families who oftentimes are the ones who suffer along with the patient because of lack of diagnosis, and then also because of the way Representative Capps has described the nature of this disease, what it does to the patient that it attacks when the white blood cells in your own system begin to attack itself and creates the disorders that it does, often resulting in people having to be fed by tubes. You can imagine the tremendous stress that this causes on the parts of parents and of course family members.

This bill comes before us not because of me, but because of a courageous woman like Lois Capps and like Sue Myrick who understand what families go through when they face issues like this.

I was fortunate to have Dr. Wendy Book from my district in Connecticut, who resides in Gastonbury, a doctor herself, as well as her husband, come before me to talk about this disorder because of their desire to make sure that the Nation be made aware of what so many children are suffering from.

She was joined by Beth Mays, who together are the co-founders of the American Partnership for Eosinophilic Disorders. When Dr. Book's son Ryan was sick before his first birthday, doctors sent him home with a feeding tube and no explanation for his mysterious illness. This illness went undiagnosed for 2 more years. Now, this Ryan, his parents are doctors. They are in the field, and so for doctors to be as confounded by a lack of understanding or a diagnosis, imagine the consternation that they feel, and then exemplify that by how other parents must feel who do not come from similar professions.

And so they felt in founding this organization, this partnership, that what was needed across the country was awareness and understanding. Quite frankly, what's also needed is funding, but it has to start in a place of education, awareness and understanding, and as most pieces of critical legislation do, it comes not from a Member of Congress, but it comes from a constituent, a citizen, who has the temerity to stand up and speak out for suffering that a neighbor or one of their own children is going through.

As Mrs. Capps pointed out, sometimes there is no cure or the diagnosis eludes all the best efforts of professions, but it is getting better, and with awareness, they know they can deal with this going forward.

Hospitals in Cincinnati, and most notably, the Children's Hospital of Philadelphia, where I visited personally, are working hard at identifying this disorder and helping parents and working with them. I want to commend the work of Dr. Chris Lancouris and Dr. Jonathan Spergel and especially Michelle Shuker who spent so much time dealing with the parents and helping them through this process.

As someone who has a son who has an illness that has gone undiagnosed, I empathize deeply with parents who go through this experience and understand deeply the need for education, the need for better understanding, and the responsibility that we share as Members of Congress to do our part, to first educate the public with respect to this disorder, but then secondly and more hopefully, to make sure that we follow through by funding and assisting.

But what you have to step back and admire, however, is the courage of these parents who, without their love and devotion and care for their children, without their consistent nurturing and support, you wonder what would happen to these children. But because of their courage and because of their ability to come forth and speak out about this, hopefully through resolutions like this and greater understanding we will be able to assist them and help them and assist families, and their not-for-profit organization will get the support that it needs, will create the understanding that it needs and provide the much needed relief for the children who are afflicted and the families that deal with this problem.

So I thank Representative Capps and I thank Representative Myrick and a number of cosponsors on this legislation for having come forward and assisted in bringing this to the forefront.

There will be members from this association on the Hill tomorrow going to various House Members and to their offices and talking with them and their staff about this disorder. Please listen to them. Take them into your heart. It is an important issue and vital not only for their children, their families, but I dare say for all of us in the country. It speaks volumes to the better angels that we have here in the United States Congress and our willingness to reach out and assist the constituents we are sworn to serve.

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