HADDS Conference Day 1: See Everyone Clearly

By: Ivette Sepersaude


This trip to Houston is different. Kai has a lot of questions and is definitely more aware of his condition. On our first night here we were able to connect with other families on the pool deck. Kai chose not to sit with us. I later asked Kai why he kept himself away, he told me that he wanted to sit back far enough to see everyone clearly. While you are here with your little ones, rest assured that they have feelings about this experience. Whether they can express it to you or not. They feel the love, they see the emotions and I have a hunch that they have an innate connection with each other. Kai played on the floor surrounded by others like him for the first time in his life. I later caught him reflecting on today’s events with his older brother. Tonight we have our first official social, I look forward to sharing my perspective on this experience soon!


Kai & JT reflecting on the day.

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The EBF3-HADDS Foundation was created to promote awareness, research, and support for a rare genetic syndrome discovered in 2016. 

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