Zion’s Story Living with MED13L

“Have faith and take heart. See what you can learn, not only from your child with MED13L but from each child as their unique self.”

By: Danielle, parent of Zion, a 3-year-old with MED13L

What is your family like?

My name is Danielle and my husband’s name is Naser. We have 3 wonderful boys, Zade (7), Zion (3), and Zahni (1). We also have 3 dogs, so it’s easy to see that we have our hands full most of the time, but our hearts are always full.

What do you do for fun?

We love to try new things. Whether it’s climbing, kayaking, fishing, or simply going to the park, a bike ride, or watching a movie together, we love spending time together. We recently took the boys to their first pro baseball game.

Tell us about the biggest hardship you face.

When we were pregnant with our middle son Zion, we found out at 18 weeks that he had multiple heart defects. In his first couple of years, the local children’s hospital became our Zion and my second home. Zion had global delays as an infant that we started noticing after his first open-heart surgery. When he was 1 year old he was barely learning to sit up and we suspected he also had autism. By 18 months he had an autism diagnosis. He started several therapies including ABA, ST, PT, and OT, all at the beginning of COVID. Working with Zion’s geneticist we suspected something pointed us to all of his medical anomalies and at 2.5 years old we got his MED13L diagnosis.

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

Participating in research is important to us for the benefits of not only finding a cure for MED13L but also in the support of parents and families to come.

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

I wish researchers could find out if any environmental factors could potentially be linked to the changes found in MED13L.

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

We have been encouraged by our MED13L family to always have hope for Zion’s future. Having a family in the MED13L community is invaluable.

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

Have faith and take heart. See what you can learn, not only from your child with MED13L but from each child as their unique self.

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