Our Story

Our world was turned upside down in 2012 when our sweet son Jaxon was diagnosed with a rare kidney and liver disease called Autosomal Recessive Polycystic Kidney Disease. Jaxon also was diagnosed with Congenital Hepatic Fibrosis which goes hand in hand with his Autosomal Recessive Polycystic Kidney Disease. At diagnoses Jaxon was only 13 months old. Along with both of these diseases Jaxon was also diagnosed with Caroli's Syndrome in...

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Updates

Jaxon surgery update

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Jaxon's surgery went according to plan!! He went home 5 days after surgery and is now at home to recover. He is getting better everyday!   Continue Reading »

Medical Update on Jaxon

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Jaxon has officially completed his first year of middle school. He has visited family in Arkansas and is getting ready for a surgery here in July. Here is... Continue Reading »

Jaxon is 12!

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Jaxon turned 12 on March 24th! For his birthday this year he chose to have his room re-done.  Then for spring break Jaxon headed to Oklahoma to visit... Continue Reading »

Medical Update!

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Update from Jaxon's mom: Earlier this month, Jaxon spent 2 days in the city at Luries having tests done. Jax had an EGD to check on his esophagus... Continue Reading »

Jaxon Update!

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Hello! Jaxon has been doing well. He is still enjoying middle school. He told his parents he wanted to travel the world and the first place he wanted... Continue Reading »

Middle School

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Jaxon's first day of middle school last month! He is adjusting well to middle school and is liking all his teachers and classes.    Continue Reading »

Goodbye Summer

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Jaxon has had a busy wonderful summer! It started with a trip to Disney World! One of Jaxon's highlights for summer was going to a boyscout camp in... Continue Reading »

Medical update

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From Jaxon's mom: We met with Jaxon's new liver doctor at Lurie's earlier this week. We really liked her! We also met with one of her fellows (and... Continue Reading »

Summer Time!!

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Jaxon finished his last year of Elementary School and is heading to 6th grade in the fall! He started off his summer with a surprise family trip to... Continue Reading »