Dragonfly Donations

Donate in Honor of a Dragonfly

Organized by CTNNB1 Connect and Cure

Lucy Hieb

Fundraiser since Jul 2024

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$8,825

76 supporters

44% of $20,000 goal

Lucy Hieb's Story

Lucy is a spirited and persevering 2 year old little girl who was born with a rare neurodevelopmental disorder called CTNNB1 Syndrome. When a genetic counselor called to tell me this news, she said "This syndrome is associated with global developmental delays, intellectual disability, movement disorder, autism, and most people with this syndrome are never able to live independently. Many are unable to ever speak or walk." I dropped to the floor as this information sunk in. My future flashed before my eyes - a future no one would want for their child. Lucy has made amazing progress so far and continues to blow us away with her strength and determination. But only we as her parents can see the daily devastation that comes with this syndrome. As she gets older, it only becomes more difficult. But there is hope! The CTNNB1 Foundation in Europe is working on a gene therapy to potentially cure this syndrome. This would mean a completely different life for our Lucy! One where she can walk, run, and talk! One where she can play with her peers, have friends, feed herself, go to the bathroom on her own, dress herself, and have a real LIFE. As parents we will do anything for our children. That is why I am asking for donations in honor of Lucy. Please select "gene therapy" in the dropdown box to donate. Any amount helps! We will not stop fighting for a better future for our dragonflies! Thank you, from the bottom of our hearts.

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