August 07, 2008

Walking for Awareness

I'd like you to meet Lexi Black...Tell me she's not one of the cutest girls in pigtails you've ever seen!
Lexi was born with a genetic condition called Smith Lemli Opitz Syndrome (SLOS), which effects 1 in ~20,000 births. SLOS babies are unable to make the right amounts of cholesterol, which is essential nutrient in cell development in our bodies.  The lack of proper cholesterol can result in delays in growth and brain development.  A typical treatment for this syndrome is to use dietary cholesterol, like pasteurized egg yolks, to help make up for the needed amounts of cholesterol. 

Lexi is fortunate to be on the "mild" side of this genetic disorder and according to her team of specialists she is developing really well.  When she was born, she stayed at the hospital for weeks after her birth, to figure out why she wasn't eating.  Feeding problems are very common with SLOS babies, doctor's were unsure of why this sweet little baby girl couldn't figure out "how to suck", so she stayed on the feeding tubes even when she was finally able to go home.  

Lexi brings such joy to the lives of everyone who knows her.  She's got the best smile.  She's got the deepest brown eyes that melt your heart you hold her.  She's got a little attitude that is a sure sign she's going to be a handful as she's grows up! 

Lexi's parents are two of the strongest, most inspiring people I know.  Raising your first born baby has got to be challenging in by itself, but then to be faced with some of the challenges they've been through, it really shows how important it is to pull together to support one another during tough times.  And that's exactly what they do.  

They have organized the Alexis Black Walk for SLOS which will be held this weekend in their hometown near Huntington, WV.  The money raised for the walk will be donated to the Smith Lemli Opitz Foundation.  They have already met their fundraising goal, which is awesome, so it's going to be a great event this coming weekend to celebrate what a cutie Lexi is and how lucky we all are to have her in our lives!!
Here is a link to the website if you'd like to read more about Lexi:

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