A very dear friend of mine has been organizing a photo shoot the past 2 years with 100% of the proceeds going to a variety of great causes. This year's photo shoot will help Samantha and Jake Lazazzaro. This brother and sister have been diagnosed with a very rare genetic disorder called Cockayne Syndrome Type II. Cockayne Syndrome is a neurodegenerative disease characterized by developmental delays, tremors, failure to thrive and loss of major milestones. There are only 180 known cases in the world. For children with Type II Cockayane Syndrome, the life expectancy is between 4 and 7 years of age. Jake turned 4 in October and Samantha turned 8 on August 2nd. She is the oldest living person with Cockayne Syndrome to date!
Over the last 2 years, Sam and Jake’s mother has been raising funds and taking them out of the country for alternative treatment, as there is currently no western medical treatment for Cockayne Syndrome. Since then, Samantha has regained her ability to walk, which she lost completely at 3 ½ years old, and has begun speaking. Her tremors have decreased significantly and she began sleeping through the night for the first time ever. In fact, just last week the school said Samantha no longer needed a walker. Jake has seen such great improvement in his walking and he too is now talking.
Over the last 2 years, Sam and Jake’s mother has been raising funds and taking them out of the country for alternative treatment, as there is currently no western medical treatment for Cockayne Syndrome. Since then, Samantha has regained her ability to walk, which she lost completely at 3 ½ years old, and has begun speaking. Her tremors have decreased significantly and she began sleeping through the night for the first time ever. In fact, just last week the school said Samantha no longer needed a walker. Jake has seen such great improvement in his walking and he too is now talking.
My sister-in-law Amy and I will be there snapping family portraits representing Eiden Photography on Sunday. If you are interested and would like to sign up for a photo slot, or would just like to send a donation, please contact Angela Killinger directly at akillinger@grabthewheel.com
So here are the details:
So here are the details:
When: Saturday September 18th and Sunday September 19th
Where: The Killinger house (Ashburn area)
Time: 9:00am - 5:00 pm
How Much: A minimum donation of $195.00 (for families of 4 or more we have to book a longer time slot so we will have to charge a minimum donation of $250. This will include a disc with family and individual photos of each child).
What do you get: A DVD with around 300-800 pictures as well as one picture of your choice cropped and edited (if you want these early for Christmas pictures please let us know what picture you want edited by early November).
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