Dear Friends & Family,
I hope this letter finds you well! For those of you who do not know me, my name is Courtney and I am the twin sister of (in my opinion) the most special individual on earth: Lucas Clark! Growing up in tandem with him after his diagnosis of Fragile X syndrome has been both inspiring and challenging. It has given me a profound understanding of the impact that a rare genetic condition like Fragile X can have on a family. I’d like to update you about his year so far.
Lucas kicked off 2023 by returning to his adult day program full-time for the first time since the beginning of the COVID-19 pandemic. This was a much needed change, but he had a rocky start. Any change in schedule is panic-inducing for Lucas. His program gradually added days, which was very hard for him to adjust to. It also would mean that he would not be able to go out to eat for weekday lunches with our dad, Dean, which he did not take well. It’s taken some time, but he’s at least used to the new daily routine.
Some of our biggest challenges with Lucas’s condition include his displays of negative behavior, finding adequate caregiver coverage, and navigating his future. I’d also like to personally apologize if Lucas has your phone number, because he sends hundreds of text messages each day requesting fast food, Disney DVDs off eBay, or diecast trucks with trailers.
My parents would like to travel, but it is usually dampened by Lucas’s inflexibility. Sometimes my sister Sydney and I are able to step in, but we both work full time so we need a little extra help.
In the spring, he stayed with our Grandma Aggie and Uncle Darrel in Palm Desert. Unfortunately, he forgot his suitcase on our porch which resulted in repetitive tantrums and screaming, “Where’s suitcase?” for two days straight. My grandparents Tom and Linda saved the day by sending it via express mail.
Upon finding his prescriptions in his suitcase when it arrived, Lucas accidentally double dosed himself with one of his medications, causing a seizure. Luckily he recovered, but this terrifying situation poses very difficult questions: Will Lucas ever be able to deal with any serious medical issue? The paramedics weren’t able to take his blood pressure or transport him to the ER due to his resistance. What would happen to Lucas if we are not around?
On a more positive note, Lucas had much to celebrate this year. Sydney got married, and we gained a brother, Justin Dunn! You can see the stellar video my dad, Dean, made about our trip.
Lucas has also been making some great progress at the gym, which has helped in his constant battle with weight gain due to his insatiable appetite.
My family’s journey with Fragile X syndrome continually teaches me that hope, resilience, and profound joy can be found in the face of adversity. It also highlights the importance of organizations like FRAXA Research Foundation, whose dedicated efforts have paved the way for research, support, and advocacy for individuals like Lucas.
Please consider making a donation, no matter how big or small, and be a part of the positive change that FRAXA is creating for families like mine.
Thank you for taking the time to read my letter. I appreciate your continued support more than words can say.
Sending all my love,
Courtney “Cor-nee” (because Lucas can’t pronounce it correctly) Clark