FAMILY STORY

The Roberts’ Journey with IQSEC2

Fight for your child and have hope.

Misty Roberts, mother of Jaxon, a 6-year-old living with IQSEC2-related syndrome

What is your family like?

We are a family of 5. Jaxon is my youngest and he has IQSEC 2. I have 2 older boys ages 17 & 11.

What do you do for fun?

We love to be outside and love to watch football. Jaxon loves to ride in the side by side and go fast.

Tell us about the biggest hardship you face.

Probably the biggest hardship is not being able to control his seizures and that he is non verbal. It is so hard to not know what he needs. We also struggle with feeding issues.

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

We want to do anything to help find ways to help these kids and adults affected.

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

We would love to help any way we can.

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

What happens and is there any hope of fixing the bad gene.

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

A lot about the seizure control and behavior issues.

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