Image Credit: Rowan at age 10
FAMILY STORY

Rowan’s SETD2 Story

“Find your SETD2 family, make friends, share your story, and never lose hope.”


By: Angela, parent of Rowan who has SETD2 related syndrome

What is your family like?

We are a family of 4. I have 2 sons, ages 13 and 10, and we have 2 dogs- 1 is a service dog for my 10 year old. My 10 year old son has SETD2 related syndrome.

What do you do for fun?

We love to go camping, swimming, quading, and having scary movie nights.

Tell us about the biggest hardship you face.

The biggest challenges are health-related challenges with my son and him having autism, intellectual disability, and severe episodes of aggression and challenging behavior.

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

With my son being diagnosed there is limited research, no cures, no treatments- no map to say what will happen or what to expect. I hope with further research, families after mine- won’t have to sit and think about the what “ifs” as much as we do.

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

By sharing our story.

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

What can we expect in the future?

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

That it appears to be a spectrum condition.

If you could give one piece of advice to someone recently diagnosed with this genetic variant, what would it be?

Find your SETD2 family, make friends, share you story, and never lose hope.

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