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Dragonfly Donations
Donate in Honor of a Dragonfly
Organized by CTNNB1 Connect and Cure
Shreve McWilliams
Fundraiser since Jun 2024
$41,759
123 supporters
835% of $5,000 goal
Shreve McWilliams' Story
Shreve is our biggest joy and is so happy every day despite the challenges that she has faced since she was born. After a relatively “normal” pregnancy she was abruptly born premature due to IUGR at 35 weeks and spent 16 days in the NICU. She was born with microcephaly and brain calcifications but didn’t start missing milestones until around 3-4 months. That’s when Brenton and I started looking for an answer to the cause of her symptoms and delays. Shortly after that we did genetic testing and found out that she has a very rare condition called CTNNB1 syndrome.
Shreve was born with an extremely rare genetic neurodevelopmental disorder caused by changes (pathogenic variants or mutations) in the CTNNB1 gene. She's one of 430 diagnosed individuals in the entire world. Her condition was a “de novo” case, meaning that it was just a freak occurrence and not passed down hereditarily. The CTNNB1 gene provides instructions for making a protein called beta-catenin. This protein is present in many types of cells and tissues so the symptoms of CTNNB1 Syndrome are extensive. One of the most challenging is mobility because she can’t crawl or walk.
We spend our days juggling our new normal: physical, occupational, and speech therapy appointments mixed in with doctor appointments, testing, and procedures. Shreve has to work 5 times as hard as other children to achieve milestones months after her peers but she doesn’t let that get her down though as she is seriously the happiest baby ever. She squeals with joy daily and has a smile that will melt your heart. Her future is uncertain and we don’t know if she will ever walk independently or talk. We do know that God has a plan for her.
Team Members
Shreve
$41,759.20
123 Supporters
Wylie McEwan
$12,690
121 Supporters
Lucy Hieb
$8,925
77 Supporters
William Reed
$9,430
54 Supporters
Caden Norbut
$6,263
60 Supporters
McKenna
$3,435
82 Supporters
Abigail Seals
$4,650
40 Supporters
Grayson
$2,981
52 Supporters
Evelyn
$4,064
38 Supporters
Mia Gibbons
$5,534
26 Supporters
Savannah
$3,985
35 Supporters
Abraham Ehlers
$5,335
20 Supporters
Story
$75
$100
$55
$55
$25
$250
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