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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