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Lucy Hieb

Fundraiser since Jul 2024

Share Lucy Hieb's Page

$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.

Team Members

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Shreve

$39,691.20

75 Supporters

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Lucy Hieb

$8,825

76 Supporters

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William Reed

$9,330

53 Supporters

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Abigail Seals

$3,780

31 Supporters

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Savannah

$3,330

32 Supporters

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Sophia Goytia

$3,051

29 Supporters

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McKenna

$1,315

34 Supporters

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Mia Gibbons

$3,750

10 Supporters

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Evelyn

$2,270

12 Supporters

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Ford Parks

$1,537

13 Supporters

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Jackson Tillery

$4,150

4 Supporters

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Stephanie Babcock

$4,100

4 Supporters

Story

Donate

$25

Shreve received a $25 donation from Teresa Crawford

11 days ago

Praying for a cure🙏🏼❤️🙏🏼
$50

Liliana Stanley received a $50 donation from Elyse Centonze

14 days ago

Anonymous loved this
$4k

Stephanie Babcock received a $4,000 donation from Stephanie Babcock

14 days ago

On behalf of the Henry’s Club organization for proceeds from the 5K for JP!
$500

Shreve received a $500 donation from Elissa & Jacob Brown

22 days ago

$500

Shreve received a $500 donation from SHOW B

23 days ago

Merry Christmas ❤️🎄
$3k

Mia Gibbons received a $3,000 donation from Gma and Gpa

23 days ago

We love you little sweet pea!!
$50

Jackson Tillery received a $50 donation from Rochelle Saling

26 days ago

Prayers for you and family
$1k

Jackson Tillery received a $1,000 donation from UA & AC

26 days ago

We love watching your progress and you fill our hearts with happiness! XOXO
Anonymous loved this

CTNNB1 Connect and Cure logo

CTNNB1 Connect and Cure

A 501(c)(3) Public Charity

EIN 83-4541448

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