SISTERS FIGHTING FOR A CURE

$1,265 of $50,000 goal

Raised by 16 people in 33 months
Elena Garcia Johnson
on behalf of Stephanie Gebel
 BRIGHTON, CO
SISTERS FIGHTING FOR A CURE!


Sydny, age 21 along with her younger sister Sevryn age 6 suffer from a rare genetic disorder called Wolfram Syndrome (WS).  Wolfram Syndrome is a rare and devastating form of diabetes.  Unlike common types of diabetes, these sisters will go on to develop vision loss, hearing loss and neurodegeneration. These symptoms progress through the first decades of life, and most patients lose their battle with this disease by age 30.

Sydny enjoys photography, listening to music, writing & drawing.  Sevryn enjoys reading and dancing, and like her older sister, she loves to draw and listen to music. Imagine losing your hearing, your vision, or both.  Imagine losing your balance or coordination, having muscle spasms and or seizures. Knowing that your body is slowly shutting down.  Sydny’s and Sevryn’s reality of living with this disease daily has become their motivation to raise awareness and funding.

They want to share their story in hopes that they can help raise the necessary funding for The Snow Foundation, a nonprofit organization dedicated to finding a cure for Wolfram Syndrome. The Snow Foundation along with Dr. Fumihiko Urano would like to conduct a clinical trial on a drug that could possibly stop the progression of this horrible disease. Financial support continues to be the rate-limiting factor in their ability to conduct these trials and get the necessary drug therapy to these patients.  To watch these girls struggle with the manifestations of this disease is heartbreaking, but to know that they could possible lose their lives because of insufficient funds, is not acceptable. 

As their mother, I am making a plea to all of you to help me raise the necessary funding in order to help me save my daughters. Please consider donating to The Snow Foundation. Your donation is tax deductible, but more importantly you are giving Sydny and Sevryn a chance to live a normal life, a life that they both deserve. No donation is too small.

Please carry them in your thoughts & prayers.  Join our fight to raise awareness for Wolfram Syndrome.  Share our story.  Help us find a cure.

HELP  SYDNY & SEVRYN FIGHT FOR A CURE!





For more information on Wolfram Syndrome & The Snow Foundation, Please visit

www.thesnowfoundation.org





+ Read More
I want to thank everyone that has supported us through our campaign & upcoming event. It is very much appreciated!!! I say thank you!!

I am just a mother trying to save her daughters. I am doing what I can. I am pleading with everyone to continue spreading the word. Help us by raising awareness, sharing our story. Lets post this like crazy! Lets make it go viral. I love my girls & refuse to give up on them!! Please don't give up on me!
Much Love!!!
Beautiful butterfly!!
+ Read More
I am hoping all of you can help me save daughters lives & other wonderful WS patients. I'm challenging everyone, skip your starbucks or fastfood run, today and consider donating what you would have spent on a coffee or burger.
We have the power to save their lives. Please share my post & consider donating. Lets make this campaign go viral!
+ Read More
Read a Previous Update
Be the first to leave a comment on this campaign.

$1,265 of $50,000 goal

Raised by 16 people in 33 months
Created February 2, 2016
Your share could be bringing in donations. Sign in to track your impact.
   Connect
We will never post without your permission.
In the future, we'll let you know if your sharing brings in any donations.
We weren't able to connect your Facebook account. Please try again later.
$20
Anonymous
32 months ago
$5
Anonymous
33 months ago
1
1
$100
Anonymous
33 months ago
1
1
$50
Anonymous
33 months ago
1
1
$100
Anonymous
33 months ago
1
1
TP
$50
Trudy Parrish
33 months ago
1
1

God bless you xo

Be the first to leave a comment on this campaign.
or
Use My Email Address
By continuing, you agree with the GoFundMe
terms and privacy policy
There's an issue with this Campaign Organizer's account. Our team has contacted them with the solution! Please ask them to sign in to GoFundMe and check their account. Return to Campaign

Are you ready for the next step?
Even a $5 donation can help!
Donate Now Not now
Connect on Facebook to keep track of how many donations your share brings.
We will never post on Facebook without your permission.