“I am the mom of a 17 year old boy named Parker. Parker was born with a rare genetic disorder called galactosemia. Parker is also visually impaired and has autism…that’s a mouthful, isn’t it? It gets easier saying all that, but it’s still a mouthful. It was a lot when he was born and it’s still a lot 17 years later, but I am here to tell you it gets easier. ”

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"I recommend that families find what works. It will look different for different families. I am typically introverted and have never been keen on sharing my personal life on social media; I found that smaller communities worked better for us."

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"Love that child, get to the doctors and everything else will fall into place"

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"As human beings, we are all fashioned to serve in whatever way and if we're able to do that not just for our own family but for others, we all are better for it."

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In this interactive virtual learning module, you will: Understand the importance of giving yourself time to process your experience and find community, recognize how to find information and make medical decisions and Identify next steps in your ongoing journey.

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In this interactive virtual learning module, you will: Define a diagnostic odyssey, how it is different from a diagnostic journey, and what it means for your family, understand how to navigate genetic testing and counseling and identify resources and tools to help you along your odyssey.

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