I cannot tell you how heart wrenching it is raising a child with an undiagnosed Medical condition. We like other families spend every free moment on the Internet searching for other cases like our childs. We go to the store and see other families picking out tricycles which reminds us when we get home we still have to pick out our child’s wheel chair. We search for Doctors that specialize in each of our child’s symptoms and spend the money we don’t have to fly them there. We wake up everyday and put a smile on our face hanging on to the hope that this may be the day we get some answers. We refuse to feel sorry for ourselves because we know nothing productive could come from it. We cannot go to the store and by a book on how to help our child excel, on what to expect for their futures or learn of new treatment options like we could if we had a diagnosis. We are shattered when we find out or child is getting tested for diseases that take most children’s lives by the age of 2 or 5 and pray our children are with us to celebrate their next birthday. We have gotten over our fears of needles and all other medical devices so that we can give our children nightly steroid injections and change their feeding tubes.We are angry with ourselves because we cannot make things better for our children because all the kisses and band aids in the world are no match for their booboos.
Please put yourself in our shoes for a moment. Imagine someone you love more than you love yourself is sick. You sit by as they are poked, prodded and hospitalized. You wipe their tears while holding your own back. You pray that God will take your vision and your hearing and give it to them instead. You know that somewhere out there has to be someone going through or someone that has gone through what your loved one is experiencing and that if you could just find their Doctor they might be able to help you. But you know finding that Doctor is like finding a needle in a hay stack.
CAL And Heather
Below is the list of the Congressmen and Women on the sub committee. Not only would it be great if people in the following states contacted them but it would also be great if everyone in any State contacted their Congressmen and Women asking them to sign on as Co Sponsors of this bill. The squeaky wheel gets the oil so we are would grately appreciate your help! John Shaedegg www.johnshaedegg.house.gov California Jane Harman www.house.gov/harman Anna Eshoo http://eshoo.house.gov Lois Capps http://capps.house.gov Henry Waxman http://waxman.house.gov Colorado Diana Degette www.degette.house.gov Florida Kathy Castar www.castor.house.gov Illinois John Shinkus www.Shimkus.house.gov Jan Schakowsky www.house.gov/schakowsky Indiana Steve Buyer www.stevebuyer.house.gov Iowa Bruce Braley www.braley.house.gov Kentucky Ed Whitfield www.whitfield.house.gov Maryland Christopher Murphy www.chrismurphy.house.gov Michigan John Dingell www.house.gov/dingell Mike Rogers www.mikerogers.house.gov Montana Roy Blunt www.blunt.house.gov Ohio Zachary Space www.space.house.gov Betty Sutton www.sutton.house.gov New Jersey Frank Pallone www.house.gov/pallone New York Eliot Engel www.engel.house.gov Anthony Weiner http://weiner.house.gov North Carolina Sue Myrick www.myrick.house.gov Tennessee Marsha Blackburn www.blackburn.house.gov Charles Gonzalez www.gonzalez.house.gov Texas Ralph Hall www.house.gov/ralphhall Michael Burgess www.burgess.house.gov Joe Barton www.joebarton.house.gov Gene Green www.house.gov/green Utah Jim Matheson www.matheson.house.gov Virginia Donna Christensen www.donnachristensen.house.gov Wisconsin Tammy Baldwin www.tammybaldwin.house.gov 
Now imagine that you can help change that. H.R. 2538 The Charles August 'CAL' Long Undiagnosed Diseases Registry Act of 2009 proposes to do just that. The bill was created by Heather Long an amazing Mother who tragically lost her son Cal 2 years ago at the age of 5 after battling an undiagnosed disease. She knew how limited resources are for people with undiagnosed medical conditions and decided to do something about it in CAL's name.
The bill would require the US to maintain an Undiagnosed diseases registry much like the registry currently used to monitor cancer patients. It would be a way for Doctors and Scientists all over the country to connect, share notes and identify similar cases. It has the potential to solve thousands of medical mysteries.
The bill is currently being reviewed by a sub committee which is made up of 54 congressmen and women. The names of the committee members and their websites are listed below. If you live in any of the following states please take a moment to send an e-mail telling them "I support H.R. 2538 the Charles August 'CAL' Long Undiagnosed Diseases Registry Act of 2009 and wish for you to support it too."
This bill has the potential to change our lives along with the lives of so many other Americans. American’s that were not given a fair shot at life like the rest of us. Remember Cal and his story a remarkable little boy who left as far before his time. Imagine a registry that could have changed his life. We spend millions make that billions of dollars in other countries this bill is asking for 5 million dollars to help not only our children, but our Veterans our family and friends. Lives that are priceless in the eyes of so many.
Arizona
