The Pettus’ Journey with HECW2

What is your family like?

My family is small. I have two children (boys), one of which is a special needs child. He is 7 years old, he is a happy child with a giant smile that will fill any room that he is in. I have a 17 year old who is getting ready to graduate high school. He loves video games and fashion.

What do you do for fun?

I love to take my son to aqua therapy, being in the water stimulates him and keeps him calm… and me as a mom, when trying to prevent burn out of the caregiver I enjoy reading, painting, and listening to music.

Tell us about the biggest hardship you face.

The biggest hardship is not always accepting all that comes with this diagnosis. Sometimes it is a lot to bear.

What motivates you to participate in research? How has participating in research been helpful for you?

I participate in the research because I am interested in learning more about HECW2 because there isn’t a lot of information about it and what ever information I share I hope I am able to help another family .

How do you feel you are helping Simons Searchlight learn more about rare genetic changes?

I believe by sharing my experience I can help families who are just getting a diagnosis or give answers to confirm some of the things they have noticed about their child.

What is one question you wish researchers could answer about this genetic change?

Is there a cure, will gene therapy work in fixing the mutation, will my son ever talk?

What have you learned about your or your child’s genetic condition from other families?

I’ve learned that not every situation is the same and its important to document everything.

If you could give one piece of advice to someone recently diagnosed with the genetic change in your family, what would it be?

Remember to breathe … it’s a long process but progress will come slowly but surely. Have faith.

How has Simons Searchlight served as a resource for you and your family?

Yes, Simons Searchlight has been a great resource to me and my family.