There is no medicine like hope, no incentive so great,
and no tonic as powerful as the expectation of a brighter tomorrow.
~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~
It is our enduring hope that somehow, Haylie and all who are
affected, will be free of Congenital Adrenal Hyperplasia.
Meet Haylie. She is my lovely and lively 5-year old little sunshine angel from just outside of San Antonio, Texas who was born with a disease known as Classical Salt-Wasting Congenital Adrenal Hyperplasia (SWCAH).
For the type of CAH that Haylie has, it means that her body doesn’t produce cortisol, nor does it retain salt, both needed to sustain life. Unless a cure is found, she will have CAH her entire life.
Most importantly, we have created this website as an insight to help ease the mind of those whose loved ones may be going through circumstances similar to ours. It is also our hope in the scope of this website, others will be able to benefit from the hard work and research that we have done for hundreds of hours over the course of the last 5+ years from navigating the first very frightening days at diagnosis, to helping to understand if your loved one is having an adrenal crisis, to meeting the challenges of dealing with insurance companies or any other issues associated with getting your loved one the best possible support and care necessary.
We also want to share the sheer joy and blessings that we have received from having a child who is truly "special" in ways both obvious to anyone who meets Haylie, and in ways that are only revealed in the hearts of those who love her and who get to watch, gloriously, the every day miracle that is our sunshine, our Haylie.
Many people are drawn to helping when they are aware of or know someone with a particular disease. NOW YOU KNOW SOMEONE WITH CAH, our Haylie, and we hope this will encourage your participation in helping us to reach our goals for EVERYONE with CAH.
If you are able to help us monetarily in our fight, please know that we know there are so many worthwhile causes and we appreciate your help with our goal. You can make a donation in Haylies name to the Cares Foundation http://www.caresfoundation.org/productcart/pc/tribute.asp.
We are also in the process of trying to collect photos of others with CAH called "Faces of Hope". The plan is to have art gallery showings across the country displaying the faces of children and adults with CAH in order to bring awareness and funding for research. I hope to be able to go to the next CARES Conference and take some portraits of those willing to participate. If you'd like to help, click on the Events-Projects link above.
We have many goals for Haylie and for finding a cure for CAH. Please support our efforts with your prayers and good wishes for our Haylie and for all who live with this disease.
Once You Choose Hope...ANYTHING's POSSIBLE!
-Christopher Reeve
_________________________________________________________________
