Jaxsyn’s Journey

Jaxsyn was born with Miller Dieker Syndrome (lissencephaly), a rare disorder confirmed with genetic testing. He spent the first 60 days of his life in the NICU trying to figure out how to live day-to-day life.

His aspirations are silent so he got a G-tube placed and had multiple complications with it which resulted in a NJ tube for a while. Because of the smooth brain we weren’t sure what all he would and would not be able to do. We did a little research and his future seemed so unsure with low muscle tone, eating issues, vision issues, and we weren’t sure what else.

He JUST celebrated his first birthday and has showed so much progress so far in his little life, like lifting his head for 10 seconds to gripping things and almost always smiling. He adores his big brother and loves Pocoyo and Bluey. He has started to half roll when he is in a good mood and we just heard his first giggle!

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Jaxsyn was born with Miller Dieker Syndrome (lissencephaly), a rare disorder confirmed with genetic testing. He spent the first 60 days of his life in the NICU trying to figure out how to live day-to-day life.

His aspirations are silent so he got a G-tube placed and had multiple complications with it which resulted in a NJ tube for a while. Because of the smooth brain we weren’t sure what all he would and would not be able to do. We did a little research and his future seemed so unsure with low muscle tone, eating issues, vision issues, and we weren’t sure what else.

He JUST celebrated his first birthday and has showed so much progress so far in his little life, like lifting his head for 10 seconds to gripping things and almost always smiling. He adores his big brother and loves Pocoyo and Bluey. He has started to half roll when he is in a good mood and we just heard his first giggle!

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