...for us, (assuming we're not in Minnesota) we'll be attending Bella's Birthday bash.
I just wanted to update all of you So. Cal. readers on Daylon's friend, Bella birthday party. I'm sure that most of you remember me writing often about Bella and the rest of the Ringgold family when we were in Minnesota. Bella was 6 weeks older than Daylon and had her transplant 8 days after him. They went through the ups and downs of chemo and transplant together and lived just 2 doors apart in the PICU. We obviously grew very close with the Ringgold family. Unfortunately, 101 days after her transplant Bella passed away. She would be 2 years old this month. In honor of her memory, the Ringgold family (and many others) are hosting a Birthday party/fundraiser with food, games, crafts, etc. All proceeds raised from the event will go directly to the P.U.C.K. organization. P.U.C.K. or Pioneering Unique Cures for Kids, is a great non-profit organization that is working with Dr. Tolar and Dr. Wagner to help fund their research while they work on a cure for EB and two other rare, but fatal genetic diseases (click on the word "P.U.C.K." to find out more). I had a conversation with Dr. Tolar when we were up in MN in Feb. about the research he is doing. The hope is that if they are able to receive enough funding to finish their research, then he would be able to pinpoint the exact stem cell linked to the form of EB that the patient has and the amount of chemo given could be less than it is now. Afterall, it is because of the affects of the chemo on the body that Bella, Elle and Sara (the daughter of the founders of P.U.C.K. and the first baby to die from transplant) have passed away and it's the reason for all of the troubles that Daylon has gone through from multi organ failure to eventually brain damage. Raising money for this cause is especially important to me of because as of right now, Daylon is the only baby to have gone through transplant and live...and we all know what kind of road he's had to travel to get there. That's a big problem for all of the other Junctional Herlitz kids out there. Since the life expectancy for these kids is less than a year, transplant obviously has to occur in infancy.
If you're in the Orange County area on the 21st, you may what to consider stopping by the party. You have to eat anyway, right? You can grab some yummy food, play an activity with your kiddos and all while supporting a great cause. I'll right. I'm done yapping. I don't want to make it feel like a high pressure sale. :) Ha, ha!
Here's the info: