On July 1st, 2018, John's 5th grandchild, Katja, was born. She was absolutely beautiful! Right away her mom noticed that she was having some trouble swallowing, but was told it was normal and not to worry. It wasn't until a routine check up that the doctors discovered those problems had resulted in Katja aspirating her milk and developing pnemonia. She was quickly admitted to the hospital where they found out that she has Joubert Syndrome.
Joubert Syndrome is an abnormality in the brain which creates low muscle tone and some developmental delays. We won't know the extent to which Katja will be affected by this condition until she is older, but we do know that she has so much love and support behind her no matter what.
The Joubert Syndrome and Related Disorders Foundation is a group that provides resources to families living with Joubert Syndrome. We are so excited to be raising money for this foundation and hope that you will help us to reach our goal in bringing awareness to this rare syndrome.