John’s Story

By: Beth, Parent of John, a 14 year old with a GRIN2B genetic change

“Breathe…Try and find what makes them laugh, and breathe… Just remember to breathe”

What does your family do for fun?

Walks, floor play, music therapy, extended family get-togethers when sensory processing will allow, car rides, watch tv shows together

Tell us about the biggest hardship your family faces.

Feeding (he’s hypersensitive to just about all foods), motivating him to engage in therapies, communicating

What about your child puts a smile on your face?

His infectious smiles and unfettered laughter

What motivates you to participate in research?

To assist other families, to potentially find new ideas to help my child

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

So far, that they all have the same infectious smiles and laughter. Just new to this so will learn more as I go along

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

Breathe…Try and find what makes them laugh, and breathe… Just remember to breathe

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

I don’t know at this time

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

Nothing can prepare you for this, especially if symptoms are severe. Everything in media caters towards typical families. It’s quite a culture shock and its okay to feel angry about it when you discover something is wrong. But know you are not alone. Others are walking this path, and will walk with you, support you, and KNOW what you’re going through. It’s a journey and it’s okay.