Sydnee’s Story

By: Jennifer, Parent of Sydnee, a child with a 16p11.2 Deletion

“Push your children. Don’t have low expectations actions for them. Help your child to be the strongest they can be. Set a good example and talk to them about their goals.”

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

The youngest in the family. Her older siblings adore her. They call her “The Golden Child.” 🙂

What does your family do for fun?

Sydnee’s three older siblings are in college. But when we are together we play board games, camp, bike ride and do service projects.

Tell us about the biggest hardship your family faces.

I think it’s just wondering how advanced Sydnee will be one and whether or not she’ll be able to live on her own. So teaching her the basic skills needed to do so.

What about your child puts a smile on your face?

Her siblings, teasing, joking and she just learned how to ride a bike at 16 years of age. That really makes her smile!

What motivates you to participate in research?

We absolutely want to help other families. In addition, we’d like to learn about other families situations and their solutions. This was we don’t feel alone.

How do you feel you are impacting our understanding of the genetic changes being studied in Simons Searchlight (16p11.2, 1q21.1, or single gene changes)?

Probably 7 out of 10. But that’s our fault for not studying the research as thoroughly as we should.

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

That children with 16p11.2 microdetion progress at different rates. That food and weight is an issue with many. That they become independent.

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

Push your children. Don’t have low expectations actions for them. Help your child to be the strongest they can be. Set a good example and talk to them about their goals.

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

What percentage of the adults get married and live out of their own? Do many of them have children?

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

We love our Sydnee! Our family is complete with her. We have all agreed she’s the most perfect out of all of us!!