Sarah was born May 14, 1998 and was a perfect child. She had no clinical features of Rett Syndrome. It was not until she was 18 months old that we decided to find out why Sarah was so delayed with her milestones and was not walking. What speech she had disappeared around this time, too. We started at Children's Hospital of Philadelphia with many different doctors. We saw four neurologists who just couldn't figure her out. It finally took a blood test 13 months after we started searching to give us some answers. We found out on Jan 16, 2001 that Sarah did indeed have a genetic disorder called Rett Syndrome. We had feared this diagnosis. During this time, we found out we were having a second baby.
Patrick was born September 10, 2000 and was also a perfect baby. I didn't realize how delayed Sarah really was until Patrick came into our lives. He passed her quickly. He loves her for exactly who she is as he doesn't know her any different. Of course there are days that he asks "why can't Sarah walk? ride bikes with me? eat with her mouth??" These are heart wrenching questions for us. Everyone asks us how do we have such a positive attitude with such a horrible diagnosis? It's hard at times and yes we do need a break but when we look at Sarah and she smiles it makes it all worth it. We try to convey this positive attitude with our children.
About a year ago we were contacted by Joanne Baldwin about the possibility of Sarah going to Camp Moore. We couldn't imagine Sarah having a "normal" camp experience. All our dreams of camp had disappeared years ago. Now the Elks were offering us something so unbelievable. We also had the opportunity to have time alone as a couple. We actually went on a cruise out of NYC to Canada while Sarah was at Camp Moore and Patrick was with his grandparents. It gave us time to "rejuice our batteries" and get some well needed rest. We are eternally grateful to the Elks and everyone who made all of this possible.
Maureen & Brien Walther Cyber-Assistant Note: Please click on our Lodge Links button for more information on Rett Syndrome and other Elk related items.