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About Lily

Lily is our little unicorn. Unique and special in so many ways. At birth, Lily had trouble taking her bottle. The doctors tried everything, but in a few short days she was deemed failure to thrive. Lily had a nasogastric tube (NG tube) to help her get the formula she needed. At 3 months old, Lily had her first surgery and was given a gastrostomy tube (G tube). This was put in place for her to be able to get not only her formula, but liquids to stay hydrated as well as any type of medication she may need. Lily’s next surgery was to help correct her vision. Lily needed to repair her eyes from crossing as well as wear glasses to help her see better. We knew something was wrong. She was not crawling, talking, eating foods as she should and was behind on most of her developmental mile stones. Shortly before Lily’s 2nd birthday, Lily had a whole exome sequencing genetic test done to help us narrow down what was causing her delays. She was diagnosed with a rare genetic mutation called CHAMP1. This genetic mutation causes severe speech delays, intellectual delays, development delays, cyclical vomiting, and vision problems. Today, Lily seems to be thriving. She’s been learning sign language during her speech therapy sessions to help her communicate with others. Lily is able to say small phrases and words to help her communicate with her loved ones. Given all of Lily’s daily struggles, she’s such a happy little girl and always wants attention and loves being held and video calling her family and friends.


Make a Difference Today

We are so proud to be raising a CHAMP1ON. There are many ways you can make a difference in supporting the Champ1 Research Foundation to help find treatments for children affected by CHAMP1.

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