sydney clark art
Courtney and Lucas Clark


Where’s Angel?” Lucas asks, over and over, when he is upset. After thirteen years, our saving grace of a service dog named Angel passed away in April. Angel literally opened doors for my family to enjoy a normal-ish life. She stopped Lucas from running into traffic, kept him from wandering away on walks, and gave him a level of comfort in tough environments like restaurants. She helped teach him social skills, as people approached Lucas to pet his dog.

This has been a year of losses for Lucas. He “graduated” from Dougherty Valley High School in June, receiving a Certificate of Accomplishment. Now he takes part in a transitions program at Del Amigo High School. It was the only option offered to my parents to continue his education.

Lucas has trouble comprehending the absence of someone or something close to him. He repeatedly asked my parents where my sister was, after she left for college, and now he does the same for me. My excitement about heading off to college this fall dwindled because as move-in day approached, the stress of deciding what to do with Lucas plagued my parents and me. We knew leaving him home would upset him, so in the end, we brought him along. He just huddled in the corner of my dorm, watching videos of garbage trucks emptying trash cans.

Perhaps it’s his replacement for Angel, but Lucas has found comfort in the internet when we go out. He streams videos (rewinding and playing) and shops for toy trucks, tractors and trailers. Another new obsession, however, is connecting to WiFi. If he sees a WiFi signal on his phone and we can’t get the password, he gets incredibly agitated. He will moan, rock, cry, and ask anyone nearby for a password.
For many years, my family prayed to be able to enjoy a meal at a restaurant. This may seem trivial, but going out in public with kids like Lucas with Fragile X Syndrome can lead to disruptive meltdowns. Maybe we should have been careful what we wished for: now Lucas is obsessed with eating out. Dinners at home are simply not enough. At every home meal he will say “Like it”, which actually means he does not want to eat what is in front of him. Confusing, right? He is like a puzzle we are constantly deciphering, piece by piece.

Despite Lucas sometimes pushing us to our limits, I know that my family would not be as close without Lucas. He teaches us patience and how to appreciate the little happy moments in life. We have learned how to sacrifice and go with the flow. My twin’s smile lights up my world and I do not know what I would do without him.

Every year we look to you, our friends and family, to help fund research for Lucas’s rare disease. New treatment targets FRAXA is investigating now look very promising for Lucas. By donating to FRAXA, you are contributing not only to a better future for Lucas and my family, but to help every other person affected by Fragile X Syndrome. We sincerely thank you for your donation!


~ Courtney Clark

Thank you to our 2016 Donors!

Funds Raised: $13,911!

AWESOME ($2500+)

Dwight and Glee Ann Davis
Thomas and Linda Leonard

PLATINUM (1000+)

Charlie and Jessica Nichol
Bob Schramm

GOLD ($500+)

Dean and Stefanie Clark
Jo-Anne and Scott Rively

SILVER ($200+)

Don George
Jacque Lovett
Garry and Chris Samuels

BRONZE ($100+)

Carol Amaral
Aldo Barbaglia
Hans Bernhardt
Julie and Rich DeBorba
Tony and Kathy Borba
John and Linda Connolly
Linda and David Danis
John and Lynne Egan
Mr. and Mrs. Jon Elfin

John and Linda Fosseen
Jerry and Carol Gaustad
Robert Goodrich, II
Kimberly Hill
Mei and Ming Hsu
Christine and Brad Knapp
Thomas and Ginger Marckwardt
Joseph Maloney
Tom MacKay
Agnes O’Neill
Andy and Katherine Wenger
Carole Wenger