HADDS Conference Day 3: We’re Not Alone

By: Ivette Sepersaude


Kai at the HADDS Conference.

Today was the wrap of an informative and emotional conference. We leave here with a greater understanding of our child’s condition, renewed hope for the direction of research and most importantly, invaluable connections with other families. There was a common feeling echoed across the conference room, “we are not alone”. Some of us have felt alone for many years, rarely fitting in with local support groups for one reason or another. There is an indescribable feeling of comradery and support within these walls. As we prepare for our trip back home, we feel like we’re leaving something behind. A piece of my little boy lives in that research lab and in the hearts of the team of researchers. In the next year we plan to support the HADDS foundation, educate our local healthcare professionals and continue building connections with our new extended family. Until we meet again Houston!


Kai with his sister Scarlett

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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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