HERO

Purchase YOUR Awareness Bracelets to show your support and help fund research

H-E-R-O stands for Hirschsprung's Education, Research and Organizations. HERO promotes awareness and donate to organizations that are currently doing research. We will help to raise awareness around this disease and also increase education, knowledge of current research and also help connect people to organizations related to Hirschsprung's. 

HERO is starting by selling Awareness Bracelets. These bracelets will help spread awareness, but they will also support Hirschsprung's research by donating 1/2 of your order to Hirschsprung's Disease Research Collaborative. Here is the link to this organization:
Hirschsprung Disease Research Collaborative:
https://hdrcstudy.org/home

Hirschsprung's Awareness Bracelet:
Bracelets will have the wording:
"Hirschsprung's Disease Awareness 
I love (which will be a heart) a Hero who needs a cure"
*If you'd like bracelets in child size please comment on how many you would like in the comments to seller in the paypal check out**

PRE-SALE (Bracelets should be ready to ship by 10/1)
$5.00 per Bracelet
50% of proceeds go to Hirschsprung's Disease Research Collaborative

About Us:

18 months ago, we had our second child, Lilah. She became very sick after she was born before we were discharged from the hospital. She was throw up bile and gagging. After an X ray showed her bowel was distended, she was admitted to the NICU. When she was 3 days old, she was diagnosed with Hirschsprung's, at 6 days old, she had surgery and was given in ileostomy. She spent almost 3 1/2 weeks in the NICU. At 5 months, she had another surgery, which resulted in a colostomy, since they discovered healthy cells further up in her colon than the first biopsy showed. She did well after her colostomy and went back in for her pull through surgery at 7 months old. She spent 10 days in the hospital after her surgery. It was a slow process after her pull thru, however after the 10 days, she did amazing with the surgery. Other than battling a rash that is always at bay (we got lucky and were able to avoid it getting too severe with the correct products), and a hospital stay due to the stomach bug and dehydration, she has done well. But with Hirschsprung's, you just never know when the other shoe will drop. It's like walking on egg shells.

Not only does my daughter have Hirschsprung's, but both my brother and sister have Total Colonic Hirschsprung's. They struggled throughout childhood with this disease and had numerous hospital stays and surgeries. As adults, Hirschsprung's continues to impact them in so many ways. 

This cause is near and dear to me and my family. I love my little HERO, and I hope we can raise awareness and also money toward research and on-going treatment.

My ultimate goal is to grow this organization and spread awareness through many different avenues (social media, 5K/10K races, ribbons, tee shirts ect ect). And also to continue to donate funding toward programs that are researching Hirschsprung's or providing out standing care to individuals with Hirschsprung's. I would also like to include information about Hirschsprung's education on this site and link people to other organizations that focus on Hirschsprung's. Right now, I'm starting with bracelets.