Friday, June 3, 2011

Paying It Forward - Bags for Beads Of Courage

A few months ago friends of ours welcomed a baby boy - Kellen - to their family.  At 28 week's in utero, Doctors learned that Kellen had a rare heart defect called Hypoplastic Left Heart Syndrome. This basically means that the left side of his heart is severely underdeveloped and cannot function outside of the womb. No one knows what causes it but sadly it is the rarest congenital heart defect in newborns. (Out of the 40,000 babies born each year with a CHD, only 16 have HLHS). 

It cannot be "fixed" but through surgical intervention his heart will be able to function somewhat normally by redesigning the right side to also take over the job of the left side. This requires a 3 stage open heart surgery for him to survive, and the first was done at just two days old. The next surgery is scheduled at 5 months old, and the third between ages 2 and 4. There is a possibility that he will also need a heart transplant in the future.

Kellen is incredibly fortunate to have access to the amazing doctors at Children's Hospital of Philadelphia (CHOP). It's one of those places that you are glad is there, but you never want a reason to go there. And if you have to go there, you never want it to be your "home away from home". And if it turns into your "home away from home" the only thing you wish for when you walk through their doors is to have your child walk out with you. 

Kellen has a very long road ahead of him, but he will have something very cool to keep track of the journey. He has a Beads of Courage lanyard. Every test, procedure, appointment- he gets a bead. And those beads add up- at only 5 months old he has over 100 beads! The beads are used to tell the story of his treatment. It gives children something tangible, it helps them cope and it is evidence of their strength. Kellen will be earning some more beads in the upcoming weeks as he goes back to CHOP for his second open heart surgery.

Kellen's mama asked me to help out some of the Cardiac patients at CHOP. Turns out- many kids don't have bags to store their bead lanyards! Some of these kids have so many beads that they can wrap their necklace around several times.  She had a GENIUS idea. The Diaper Bag Wrangler Link Loop Diaper Bags would make a perfect Bead Bag! Mama got ahold of some official "Beads of Courage" labels and I sewed them onto 20 of my Link Loop Bags.

I am so happy to be able to donate these bags to the kids at Children's Hospital.  If you are interested in donating to the Beads of Courage program, they have information on their website HERE.


Kathie Quinn said...

After being at Dell Childrens Hospital today, let me just tell you how WONDERFUL it is for you to do this. When Alby was born, she was in the NICU and we had no idea how long she'd be there, so they treat every new baby in the NICU the same. I got a 'nursing nicu moms' bag that had some homemade burp cloths and a homemade cloth bag to carry my nursing supplies around in. It was in this amazing retro fabric with cartoon deer on it. I will keep it the rest of my life. As will those moms with those bags. :) You ROCK!

Heather said...

This is awesome, my Oldest, Billy, now 6, has a similar diagnosis to kellan, he also is treated at CHOP, I am a NICU nurse at another local children's hospital and I have to tell you this is wonderful. The little things that keep these kids and parents smile, so thank you a million!!

Betty said...

Beaded Lanyards, Bangle Watches, Fashion Watches Wholesale, Beaded Lanyard Wholesale, Gemstone Watches, Narmi, Watch Faces, etc. Sarahwholesale has it all!