First, i would like to thank you for opening this page and reading about the very special little girl I am about to tell you about. her name is Lily and she is the daughter of very dear friends of ours. We love Lily very much and she has brought us so many laughs and special times. That is why we are participating in this event.....to support Lily, her family and all of the children affected by Rett Syndrome.
When Lily was 19 months old, she started having difficulty breathing and episodes of hyperventilation. She seemed uncomfortable and would wince in distress. She was no longer always "happy, easy Lily" and was often irritable, withdrawn, and not interested in her toys. She started grabbing at her clothing and wringing her hands. She wasn't talking as much and she just didn't seem to be herself. It became obvious that something was terribly wrong and it seemed Lily was getting worse every day. She was hospitalized twice and saw several specialists but for weeks her mom and dad just could not piece it all together. Lily was put through test after test and it just didn't make sense.
Finally, one of her doctors mentioned Rett Syndrome. Her mom looked it up and... it fit! She had nearly all the symptoms. None of us wanted to believe it because Rett Syndrome is a rare, complicated, devastating genetic disorder. She saw two specialists that said she met most of the criteria for a clinical diagnosis. They quickly sent off a sample of her blood for the DNA Rett test and Lily did indeed test positive.
Lily is lucky enough to have the most amazing parents EVER! I cannot express to you the amount of strength that they have shown while fighting their way through this difficult diagnosis. They are positive and doing everything in their power to make sure Lily is given every opportunity to cope, improve her skills and hopefully someday, be cured.
Thanks for reading Lily's story! She is a beautiful, loving, bright, sweet, and inspirational child. She is also a fighter and is much tougher than you'd think. Her family is ready for the challenge of Rett Syndrome and will do anything to help their sweet Lily Charlotte Brown! We are going to stand with them, through good and bad times and so this is our chance to raise money to help find a cure for Rett Syndrome. Any amount of money will make a difference and we thank you in advance for your generosity and support!