By: Threasa, Travis, a 15 year old with a CUL3 genetic change
“Don’t give up. There will be hard times but there are good times too. Remember to celebration every milestone. Also, encourage all people with autism to join the study.”
What is your child’s relationship like with his/her siblings?
Travis wants to hang out and play with his older brother, he says the same things over and aver to Tyler. He always asks what is his favorite color what is his favorite numbers & what is his favorite shape. It’s his way of asking a question and know that Tyler will answer back. That is what a conversation looks like to Travis. He has recently started asking why?
Travis : What is your favorite color?
Tyler: Green Travis why?
Tyler : Because it reminds me of grass.
What does your family do for fun?
We like to play games on game night. Travis likes Dominos, go fish , connect 4 and Candyland. We also like to go to Seattle for and overnight trip. Zoo, swimming, raising pigs for FFA
Tell us about the biggest hardship your family faces.
We almost became homeless. Darren, my husband was hurt on the job working as am EMT and after emergency back surgery he learned how to walk again. Working as a dispatcher for a minimum wage he went back to school and graduates this month as a respiratory therapist. I had to go back to work after 15 years of staying home to take care of Travis who has autism CUL3. Every since I went back to work Travis has been regressing. His speech is unclear he has started slurring his words he has lost muscle control of his mouth and has started drooling. We are seeing a neurologist today. I am wondering if the CUL3 has anything to do with it. We wish we could talk to other families.
What about your child puts a smile on your face?
Travis is funny and loving. Makes me smile when I see him playing with his brother and then reaches over to give him a hug.
What motivates you to participate in research?
I am Travis’ voice. I love to learn more about Travis and why he has autism. I want to know more about what this gene has to do with autism. Is there something we can do to help Travis? I wish there was a way to reverse autism. It makes Travis angry, frustrated and aggressive. I want to understand how I can help him.
How do you feel you are impacting our understanding of the genetic changes being studied in Simons Searchlight (16p11.2, 1q21.1, or single gene changes)?
The more we know scientifically about DNA and better we can help these children that are negatively affected by it. Not everyone that has autism wants to learn more or find a “cure”. The ones who can advocate and communicate their wants, needs and feelings don’t want to participate in research because they can function in society. But like my son, he can’t and I feel the more we can learn about how Travis is effected by autism and CUL3 the better we can help him be the best he can be.
What have you learned about your child’s condition from other families?
I haven’t learned anything yet, but I hope one day we will be able to talk to other families with the CUL3. We did learn a lot from Dr Chung.
If you could give one piece of advice to someone recently diagnosed with the genetic change in your family, what would it be?
If there are communication delays get in for speech therapy ASAP. We got a late diagnosis. Travis was 6. I feel if we could have known he had processing and communication delays we could have started earlier.
What is one question you wish researchers could answer about your child’s genetic change?
How does this effect Travis and how can we help Travis?
Is there anything else you would like to share with other families?
Don’t give up. There will be hard times but there are good times too. Remember to celebration every milestone. Also, encourage all people with autism to join the study.