Kaiya’s Story Living with a 16p11.2 Distal Duplication

I feel excited.

Kerrie, parent of Kaiya, a 9-month-old living with a 16p11.2 Distal Duplication.

What is your family like?

My name is Kerrie I have 3 children we live in Australia in remote Cape York. My baby tested positive for the 16p11.2 Distal duplication. We had trouble feeding from birth and lost a lot of weight we were flown out to the main hospital to run tests and only this duplication came back he had nothing else wrong with him. He is now 9 months old and we still battling his weight he is just not that interested in food or bottles.

What do you do for fun?

We do a lot of water play, fishing, camping

Tell us about the biggest hardship you face.

Living remotely and not having access to a pediatrician all the time and just the unknown all ways feeling helpless

What motivates you to participate in research? 

Wanting to find out as much information as I can.

How do you feel you are helping Simons Searchlight learn more about rare genetic changes?

I feel excited.

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

I have way too many questions to ask.

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