Thursday, May 12, 2011

What are you doing next weekend?....

...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:
Oh! PS- Still no news on when we'll be in Minnesota. We'll keep you posted.

8 comments:

Anonymous said...

I definitely remember Bella. We can't be ther on the 21st but based on you making us aware of this we are definitely making a donation. Your son's story has touched me and my family dearly. Anything we can contribute to making it work for other kids we will do.

How is Daylon doing? Your last post about him not smiling or babbling anymore has me very sad. Hope things are better.

Everyday Edling said...

Thank you so much for donating to P.U.C.K.! That's wonderful!

Bella's Blessings said...

Thanks, Jennifer! We can't wait to see you and the family again! Much love, The Ringgolds.

Sara said...

I am so excited to meet you guys at the bash...Ignore me if I start crying when I hug you, ok?
:)

Edling's said...

You got it :)

Anonymous said...

Jen; Hope to see all of you at Bella's Birthday bash and our beautiful adopted grandkids. We are planning on going on Sat. Hope things are going better for Daylon and that you will get to take him back to MN real soon. You are all in our thoughts and prayers and We Love You. Give the kids a big hug and kiss for us and we hope to see all of on Sat. Take Care & God Bless.

All Our Love;
Myrna & Dwight CA

Linda said...

Hi Jenn: Hoping and praying that the Birthday Bash is a HUGE success and the Ringgolds receive lots of money for the cure. Wish I could be there but I live on the east coast.
Your family is always in my prayers. Daylon is a very special little boy. I have a special fondness for all EB children but especially JEB children.
Keep the Faith.
Love and Hugs Leah's Nana

Mom to Many said...

Many difficult days, much strength gained. Much good to still be done.

<3 Cheryl