The Moodleys’ Journey with GRIN1

What is your family like?

My family is fun loving, loud, and living life to the fullest.

What do you do for fun?

We go for walks on the beach or promenade. We play outdoors.

Tell us about the biggest hardship you face.

Josh, our 4 year old son, has a GRIN1-related disorder. Every outing no matter how small has to be well thought of to make sure all his needs are met.

What impacts your to participate or not to participate in research? 

I am from South Africa. As far as I know, Josh is the only child diagnosed with this disorder in our country. It has been difficult to participate in research from other countries.

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

What treatments seem most viable?

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

These kids may not fit the blueprint of the world, but they have brought a light into each home that’s so unique and amazing. They express so much love and warmth without saying a word.

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

For the families, life as you know it will change in so many ways, but don’t lose hope. Celebrate the small victories and with each passing day, you will gain strength that you never knew you had.

How has Simons Searchlight served as a resource for you and your family?

Allowing me to tell our story has been a good experience hoping that it can help others.