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Recently I was afforded the opportunity to do headshots at a benefit for The Lacey Rose foundation. What an extraordinary little girl she was! The benefit was at The Glamor bar in down town Denver Colorado. Lacey had so much fun getting her nails and hair done. I walked over to her and she stared at me shyly. I said "Lacey you better go get your picture taken when your all done getting all done up!"
She gave me a nervous smile.
As we got into the benefit she decided to come over. She was very curious about my camera. So I sat on the floor with her and showed her how it worked. Her eyes just lit up!!!! Disappeared was the shy little girl on the floor and out came all this personality. She took so many pictures that night! Of her sister, of her mom and dad, but I think she had the most fun with my husband who kept making funny faces at her.
Sounds like a "normal" little girl right.... I hate that word... normal. What does that even mean? You see Lace Rose has Congenital Diaphragmatic Hernia as well as two large holes in her heart. Her final diagnosis was Arthrogryposis Multiplex Congenita or AMC, which is a rare syndrome that greatly affects the congenital joints. AMC occurs in 1 in 3,000 births. Of these births, 20-30% die before their first birthday.
Once you get to know her its hard to remember that she even has AMC. To her this life is "normal".
Her family started The
Lacey Rose Foundation to provide many different therapies, to all types of children while simultaneously giving children & families a healing environment, and specialized care. The foundation will be a ranch outside of Castel Rock Colorado.
The foundation has many opportunities to volunteer or donate. Please visit http://www.laceyrosefoundation.org/
168,000 children in Colorado live with special health care needs.
Number of babies born with Down Syndrome each year in the U.S.
Percentage increase in last 20 years of diagnosed cases of autism
1 in 50 children in the U.S. will be diagnosed with Autism
Percent of the nation's children have special health care needs
Parents spend $615 dollars per month an average of $7000 dollars per year on out-of-pocket medical expenses on their special needs child.
All information on this blog was received from The Lacey Rose Foundation website http://www.laceyrosefoundation.org/