The Sanders’ Journey with GRIA3

What is your family like?

Richie’s biological dad hasn’t been in his life since 2 years old. My boyfriend, Rob has been in our lives for 3 years and the 3 of us live together. We try our best to live life a day at a time. We love hugs, laughter and spending time with family.

What do you do for fun?

Anything outside, walking around our community, trips to the playground, playing with a soccer ball. We also love playing in front of the mirror and bath time. Richie loves watching wheel of fortune and jeopardy.

Tell us about the biggest hardship you face.

Aggression and self harm. Communication has gotten better through sign language, pecs and Richie’s aac device. However it’s still challenging at times. My biggest fear is what happens when I pass away.

What motivates you to participate in research? 

I want to provide the best life I can for my son while also having an opportunity to help others.

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

I’ll provide any details you would like and will participate with the group.

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

We need better treatments.

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

I’ve learned we are not alone and that there are many others out there fighting for a better life for our families.

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

My faith was challenged and I’ve gone through some really dark times. My connection with God is how I have faith, hope, and truly believe we will help our kids.