Hirschsprung's Awareness Bracelets

Hirschsprung's Awareness Bracelets 

$5.00 each

Available in Adult and Child Sizes

$3.00 Shipping US

$10.00 International Shipping 

Hirschsprung's Family Event

HERO is starting to plan a Hirschsprung's Family Day Event for this Fall in Albany, NY. I would like to offer this event as a FREE event for families interested in attending. I need to raise the funding to host this event. I will need funds for the following items:
$150-$200.00 for the event space
$150-$200.00 for food/drinks/tableware ect.
$100-$200.00 for kids activities for the event

After I raise enough for the event it's self, I would like to get more funding to help people with hotel accommodations. I would love to raise enough to give everyone a great discount on staying in Albany during the event.

If we are able to raise enough for that goal, I would like to add a second day to the event. The first day being on a Saturday and the 2nd that Sunday morning.

If you are interested in attending this event and can provide a donate to make this all happen.. that would be wonderful!!!! Feel free to start your own donation campaign to raise funds to be able to attend. It is so important that we find a time to get together, especially for our kids. It is so important for them to meet other children with this disease.

Any amount that can be donated is welcomed and appreciated. All donations bring us one step closer to making this event come together. Feel free to make a donation below:

Holiday Awareness Gifts: Give the Gift of HOPE

These new items will make wonderful Holiday gifts for the ones that you love and will help spread awareness and raise funding for Hirschsprung's Research. 50% of proceeds will be donated to the Hirschsprung Disease Collaborative Research.

Cut off date for Holiday Orders is December 12th. Order received after December 12th may not arrive prior to December 25th. These are for US sales ONLY. Bracelets are still for US and International orders, however these additional products can only be shipped to the U.S.

HIRSCHSPRUNG'S AWARENESS ALUMINUM KEY CHAIN

$20.00

HIRSCHSPRUNG'S AWARENESS HOPE ORNAMENT
$25.00

AWARENESS BRACELET
$5.00

Awareness Bracelets are ready to be Shipped!!!!

Bracelets are ready to be shipped out today!!!!!! I am so excited to get these to everyone who has supported this cause! Together we have raised almost $200.00 toward Hirschsprung's Research and also will be increasing Awareness at the same time!

Hirschsprung's Awareness Bracelet:

 

Bracelets are $5.00 each
**You can get them in adult and child sizes, please add a comment at check out stating which you would like**
50% of proceeds go to Hirschsprung Disease Research Collaborative https://hdrcstudy.org/home

I wore my bracelet yesterday, and it was a reminder of how far we have come with Lilah and also within my family. My brother and sister have always been my Heroes as children, for all they went through. All the surgeries, hospital stays, sick days, pain. And now my daughter battles this same disease. Luckily she has done well so far and I continue to pray that she will do well in the future. We are never immune to this diseases complications.

I am starting to plan other events to raise awareness and money for research. I plan to expand this organization and offer much more. I'm starting to plan an event in January that will be held locally (I'm located outside of Albany, NY). And I am also hoping to offer a larger event in the spring. I will continue to update everyone about these events as the details unfold.

I am also planning on selling other Awareness Merchandise. So continue to visit this blog for updated items.

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.