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Sweet and Spunky Savannah's Fundraiser:

Find a Cure for VWM

Sweet and Spunky's Photo
Sweet and Spunky's Photo
Sweet and Spunky's Photo
 

Be our Superhero !
June 09, 2016

You have the power to help us #findacureforvwm! Please consider donating  ! Thank you !  See more
Sweet and Spunky Savannah

THE STORY:

Sweet and Spunky Savannah

My daughter Savannah was born a sweet healthy baby girl on March 18,2002. As she grew she sometimes had trouble with her balance and after a fall at daycare at the age of four we went to her pediatrician where she was diagnosed with having ataxia and an MRI was scheduled for March 27,2006.

Just nine days after her fourth birthday my parents and I were sitting in a neurologists office being told that my daughter had what they thought was metachromatic leukodystrophy (MLD). Never having heard anything about leukodystrophies before. We had our blood sent to Prof. M.S. (Marjo) van der Knaap and she discovered that Savannah actually has Vanishing White Matter (VWM) Leukodystrophy.

I cried for days not knowing how long I would have my only child.

Today — Savannah is now 14 years old. She loves to sing, tell stories and be as independent as possible. She is in a wheelchair a big part of her day and does have more issues with her legs and balance yet never gives up trying to do what she can.

Savannah is a sweet spirit who touches everyone she meets and I am very thankful for having amazing family and friends who support us through this journey that we are on.

Let’s raise awareness and Find a Cure for VWM !

Do what you can… Share Savannah’s story. Send her dedicated family a good thought.

Donate your time or heart to a cause at some point this month. Talk with your friends and families about the VWM stories ..

Donate if you can,even if it is small amount. Thank you !

DONATE

To This Fundraiser

$575

MONEY RAISED
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  • Dawn Christensen

    $25

  • Melissa Hardy

    $100

  • Karen

    $50

  • Michael and Molly Terry

    $250

  • Karen

    $50

  • Michele Pedler-Tynan

    $50

  • Wyoma

     

  • Find a Cure for VWM in honor of Savannah

    $25

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Fundraise for this Campaign

The Team: $112,455 TOTAL RAISED SO FAR

JOIN THE TEAM
Fundraiser Title

Find a Cure for VWM Leukodystrophy

Amount Raised

$69,711

 

14% Raised of $500,000 Goal

Fundraiser Title

Bethany Jones

Amount Raised

$13,916

 

278% Raised of $5,000 Goal

Fundraiser Title

Rachel Schonbachler

Amount Raised

$10,560

 

1056% Raised of $1,000 Goal

Fundraiser Title

Erika Mealhow-Havlik

Amount Raised

$8,860

Fundraiser Title

Sam vs VWM

Amount Raised

$3,761

Fundraiser Title

Alexis Conrad

Amount Raised

$3,275

Fundraiser Title

Angel Gallegos

Amount Raised

$1,110

Fundraiser Title

Sweet and Spunky Savannah

Amount Raised

$575

Donor Comments

Find a Cure for VWM in honor of Savannah

Find a Cure for VWM in honor of Savannah

DONATION: $25

2 years ago

Wyoma

Wyoma

2 years ago

Michele Pedler-Tynan

Michele Pedler-Tynan

DONATION: $50

For my love of Savannah 2 years ago

Karen

Karen

DONATION: $50

2 years ago

Michael and Molly Terry

Michael and Molly Terry

DONATION: $250

Love You Tina!! 2 years ago

Karen

Karen

DONATION: $50

2 years ago

Melissa Hardy

Melissa Hardy

DONATION: $100

This is for the sweetest girl I know. I'm so very thankful that I was able to know Savannah. She can turn anyone's bad day into a better one. 2 years ago

Dawn Christensen

Dawn Christensen

DONATION: $25

This sweet young lady is amazing 2 years ago