Hello family and friends! It's me again...Lexi Black! Welcome to my fundraising website!
I would like to give you a little update on me. I am 3 years old now, and I am a happy little girl who loves to play with my baby dolls and play outside. My mommy tells me I'm sassy sometimes too! :) I just started going to preschool when I turned 3, and I love it! I have learned a lot, and I especially like to sing the songs I have learned like "The Alphabet Song", "Baa Baa Black Sheep", and "Twinkle, Twinkle Little Star". I also love to watch Sesame Street and the shows on Nick Jr. and Playhouse Disney. Most people don't realize what a special little girl I am...they think I am just very small for my age. But actually, as you probably already know, a special detail about me is that I was born with Smith-Lemli-Opitz/RSH Syndrome. Check out their cool new website! There is even a story about me on there! (www.smithlemliopitz.org)
SLOS is a rare genetic disorder (affects 1 in ~20,000 births) resulting in my body’s inability to create and process cholesterol correctly. You are probably thinking – wow, I thought cholesterol was a bad thing? Cholesterol is actually an essential nutrient that supports organ function, brain development, and overall growth. Without cholesterol, or when the cholesterol process malfunctions, children experience developmental delays and feeding difficulties, and in some cases they may suffer severe physical malformations or medical conditions that could be life threatening. Approximately 80~90% of affected children who are conceived with SLOS are lost before they are born, and many children born on the severe end of the spectrum will die before they turn 1 year old. I am currently one of ~500 children and adults with SLOS living in the United States.
Think for a minute about how you would feel if you had a child with a life-threatening disorder and there wasn't enough money for research to find a cure. Would you give up hope? I sure hope not. My mommy and daddy sure aren't - they are fighting...
They are fighting for better research! They are fighting for better cholesterol treatments! They are fighting for a cure! They are fighting to raise awareness of SLOS so that families can find a proper diagnosis!
Please join our fight! Right now I am helping my mommy & daddy get ready for the 3rd Alexis Black Walk to benefit the Smith-Lemli-Opitz/RSH Foundation. It will be held on Saturday August 7, 2010 at Ritter Park in Huntington, West Virginia. Walk registration begins at 10:00 a.m., and the walk will start at 11:00 a.m. Lunch will be provided following the walk, and there will be fun activities for the kids, like face painting and an inflatable jumper. We will also be having a silent auction with some great items, so come prepared to bid and win! In the last 2 years, with your help we have raised almost $21,000 for the SLO/RSH Foundation at the Alexis Black Walk, not to mention a lot more awareness of the disease.
All funds donated are tax-deductible and are given directly to the Smith-Lemli-Opitz/RSH Foundation, a non-profit organization dedicated to spreading awareness of SLOS, funding ongoing research into SLOS, and assisting in finding better treatments and maybe even a cure for Lexi and kids just like her. The SLO/RSH Foundation also provides a way for families of children with SLOS to stay connected and keep up on the latest research through an e-support group, a biannual conference (which we attended last year!), and semiannual newsletters.
I bet you are thinking about how busy you will be this summer…and what if you cannot come? Can you still donate? Absolutely!! We will be accepting credit card donations through this secure website (a 7.5% fee will be deducted from the donation for Firstgiving fees), or you can mail a donation to SLO/RSH Foundation, c/o Jason & Mandy Black, PO Box 904, Barboursville, WV 25504 (make checks payable to SLO/RSH Foundation).
Thank you so much for joining in our fight to find a cure for my syndrome! By making your donation, we are one step closer to kids with SLOS leading healthier lives! I hope to see you there!
Love,
Lexi Black
(and my mommy & daddy!)
p.s. Many families donate in honor of other SLOS children. WE WALK IN HONOR OF AND TO BENEFIT ALL KIDS WITH SLOS!
**The official registration and financial information of the Smith-Lemli-Opitz/RSH Foundation may be obtained from the Pennsylvania Department of State by calling toll free, within Pennsylvania , 800-732-0999. Registration does not imply endorsement.
***West Virginia residents may obtain a summary of the registration and financial documents from the Secretary of State, State Capitol, Charleston, West Virginia 25305. Registration does not imply endorsement.