Tristan’s Story

By: the parent of Tristan, a 4 year old with a 16p11.2 Deletion

“Love your kid unconditionally and keep in mind each child is unique so all may not apply to your child.”

What is your child’s relationship like with his/her siblings?

Typical boys alot of play and bickering

What does your family do for fun?

Try to do family outings or getaways

Tell us about the biggest hardship your family faces.

Trying to understand what’s ahead for my son’s future since these genetic testing results came 2 months ago

What about your child puts a smile on your face?

Resilience from birth to now, his strength both physically and mentally, he’s just special

What motivates you to participate in research?

I have a lot of questions that have no answers and it’s an awful feeling. Also if my son’s test or journey can be of some help to anyone out there then why not?

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

Not much yet just started researching and learning about this recently

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

Love your kid unconditionally and keep in mind each child is unique so all may not apply to your child.

What is one question you wish researchers could answer about your child’s genetic change?

Serious risks that lie ahead for my son

Is there anything else you would like to share with other families?

Be strong and hang in there….I’ve been fighting since his birth at 28 weeks of life and as long as he’s willing push forward I will be there to help him in anyway I can.