Clark 2013 Campaign raised $10,405

Funds Raised: $10,405!

Update by Stefanie Clark

Where has the time gone? I can’t believe another year has passed since I wrote last year’s letter. It’s time to update you on how far Lucas and FRAXA have come in the last year. As much as we hope and pray for a cure, Lucas still suffers from Fragile X Syndrome.

Our “man child” continues to grow and mature right before our eyes. Lucas just celebrated his 16th birthday on October 1st.  It’s times like these that make us a bit sad that he won’t be heading down to the DMV to take a driving test like his twin sister, Courtney.

Lucas is now in his second year of high school. Instead of studying typical high-school subjects, Lucas is now learning more life-skills to help him get by. We’ve realized that the more we can do to help him get some sort of job and be productive, the better off and happier he’ll be in life.

Lucas continues to enjoy his preschool television programs; a favorite this year is Sprout.  He has starting collecting airplanes instead of Disney cars and trucks. I think this stems from his love of airline travel. He has become quite the traveler; something our family has worked hard to achieve since we would all miss him too much if he didn’t travel with us. For many years, he suffered extreme anxiety over vacations and airline travel. In fact, he had so much anxiety that he would get diarrhea days and weeks before knowing he was going to be flying. (This year’s TMI tidbit).  We are proud to say that he now requests to go to many places and use many modes of transportation including planes, trains, buses, boats and BART!

His independence continues to grow. He needs no reminders for his morning school routine, from getting dressed to making himself breakfast and then waiting for the bus. He so enjoys taking the ‘short bus’ to and from school; it’s one of the best parts of his day.  His love of cooking continues to evolve as well.  This past year he has mastered the box cake independently from start to finish. He makes a cake almost once a week. He has become quite the kitchen helper too.  He unloads the dishwasher, takes out the recycling, peels carrots, cracks eggs, and measures ingredients. He is definitely learning valuable life skills.

Lucas’ twin sister Courtney has this to say:

Having a twin brother with Fragile X Syndrome has changed the course of my life. In the past, I have thought about what it may have been like if Lucas did not have a genetic disorder. We recently celebrated our sixteenth birthday, and he could have been driving like me and living a regular teenage life. Instead, he collects airplane sets and watches children’s shows on television (I must admit that I enjoy watching some of them with him).

It is a struggle to not be able to know what goes on in his mind. One of the worst feelings is not being able to help or understand him. My heart drops when I explain his condition to others because Fragile X Syndrome is unfamiliar and little-known among people. I hope to spread awareness and become involved in the FRAXA program as I grow older. Through Lucas, I have learned to appreciate everything in my life. I am thankful for him every day, because I would not be who I am without my angel of a twin.

Thank you to our Donors!

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Dean and Stef Clark
Dwight Davis
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BRONZE ($100+)

Brian and Cynthia Atwood
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Judith Bremer
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Marilyn Hostman/Lightfork
Raju Indukury
Dr. Jeffrey Jarvis
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Thomas and Carmen Nokes
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Alan and Cindy Schaer
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Michael and Cynthia Simon
Amy Spangler
Roger and Jill Stager
Mee Tang
Rosemary and David West
Briggs and Kathleen Wood

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