Race for Beckwith-Wiedemann Syndrome Awareness

For: Children with Beckwith-Wiedemann Syndrome BWS
Organizer: My BWS Baby
$396
of $5,000 goal
7% Complete
Raised by 10 donors

The Story

Children with Beckwith-Wiedemann Syndrome or BWS grow abnormally fast and usually have feeding issues due to macroglossia (enlarged tongue). Most spend weeks and even months in the NICU. 

Beckwith Wiedemann Syndrome also poses a risk for childhood cancers, so they have blood draws every 6 weeks and ultrasounds every 12 weeks to check for tumors. 

To learn more, please visit www.mybwsbaby.com

Our son was born with Beckwith-Wiedmeann Syndrome. We have learned a lot about this rare overgrowth disorder and it is our passion to raise awareness and help others in need.

This fundraiser will allow us to help pay for the countless medical costs and surgeries. These children already go through so much and the added stress of denied claims and out of pocket medical expenses is the last thing a parent needs when caring for their child.  

Thank you for being apart of our journey and helping raise awareness. Every little bit helps, even sharing this fundraiser can help raise aweraness!


"I'm BIG and I know it"

Fundraiser Updates

Posted on April 5, 2015

Posted on April 5, 2015

We had an amazing 1st annual Race for BWS Awareness! I am in awe of all the love and support from so many. A huge shout-out to all of you who helped make this happen. We are already counting down to next years walk. 

For more info, please visit: www.mybwsbaby.com

Posted on March 12, 2015

Posted on March 12, 2015

Thank you for your donations! All donations made until March 30th, 2015 will be donated to the following family: We will be sending all donations to a BWS family whose one year old son (Xander) recently went through a liver transplant after finding a second tumor. He is also undergoing chemotherapy for the second time. Our hearts go out to this family as we continue to pray for healing and strength. 

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