Monday, May 05, 2008

Sick Kids Radiothon in Peterborough - May 9th



These are my favorite girls.

As part of our fight against neuroblastoma over the past 2 1/2 years, we have been encouraging Sydney to take actions that help her feel that she is helping her little sister. She's always been a bit of a diva (in a good way), and interested in helping others.

Here's the depressing backstory. Georgia was diagnosed with neuroblastoma on January 6, 2006 (the news was delivered to us at about 1:41 pm).

Neuroblastoma is a rare and often fatal cancer of children (up to 80% will die from it before the age of 10). Because it's rare, the pharmaceutical companies aren't interested in doing research--there's no profit in rare diseases. There were no government funds researching this disease, either, because there were no theories that promised any sort of success. And the big national cancer societies devote less than 7% of their budgets to ALL children's cancers. This was pretty depressing to find out.

But, in the midst of darkness, there is a flicker of light. Families are taking matters into their own hands. The families of neuroblastoma children, and the families of angels (who have lost their fight) are banding together and raising the money required to start research. The Birrell family from Peterborough, Ontario, started a fund when their son, James, was deathly ill. They have raised over $2 million, initial studies have shown enough promise to attract some federal funding, and their current goal is to set up an endowment fund so that the money will be there to support research in the future. They have given us so much hope.

So, we started raising money for The James Fund at SickKids Hospital in Toronto. My daughter Sydney, who was 8 at the time, put a piggy bank in the office of her school. And she asked me to make something that she could sell.

I made bracelets (and am still making them).

She's" done radio advertisements for Sick Kids, and television interviews.

I'm telling you all this because she's going to be featured on a radiothon this Friday afternoon on two Peterborough, Ontario radio stations between 2 and 3 pm. They both have web streaming, if you're interested she'll be interviewed on The Wolf. ca between 2-2:30 and 980 Kruz am between 2:30 and 3 pm.

I'm so proud of her.

Georgia's prognosis is relatively good. Because she has other issues that were being followed with abdominal ultrasounds, her adrenal tumour was found very early and removed. Right now, she is 2 1/2 years NED (no evidence of disease). This is good, but we always say it with our fingers crossed. And we will continue to participate in our fundraising until we can say that there is a good treatment for this disease that will give some hope for the 50 families in Canada and 600 in the United States who are given this death sentence diagnosis every year.

Thanks for listening.

4 comments:

AJay Piniewski said...

Hi,

I am the Dad of AJ, a 14 year old cancer victim. I wanted to make you aware (maybe again) and enlist your help for the Cure Childhood Cancer petition! The GREAT news is that CureSearch, LIVESTRONG and Alex’s Lemonade Stands have ALL written about the Petition on their websites! And TX Children’s and DUKE have both allowed us to setup paper versions inside the hospitals! WE ARE MAKING HEADWAY and are at over 11,000 signatures! But we need your help again. If you can please make your readers aware, email it around again, and give just a little publicity, I think we can make this happen!

Thanks again,
AJs Dad
http://www.thepetitionsite.com/1/CureChildhoodCancer

AJay Piniewski said...

Hi,

I am the Dad of AJ, a 14 year old cancer victim. I wanted to make you aware (maybe again) and enlist your help for the Cure Childhood Cancer petition! The GREAT news is that CureSearch, LIVESTRONG and Alex’s Lemonade Stands have ALL written about the Petition on their websites! And TX Children’s and DUKE have both allowed us to setup paper versions inside the hospitals! WE ARE MAKING HEADWAY and are at over 11,000 signatures! But we need your help again. If you can please make your readers aware, email it around again, and give just a little publicity, I think we can make this happen!

Thanks again,
AJs Dad
CarePage - AJsSpace
http://www.thepetitionsite.com/1/CureChildhoodCancer

Haven said...

Great site!!! I'm so happy I found it. I plan to look you up on Facebook! :) My daughter also has Neuroblastoma.

BoufMom9 said...

So glad to come across your blog. It is so nice to see some "happy" stories about neuroblastoma.
I have a friend whose little girl Gia is in her second round of battling the disease and another friend whose two year old twin just died from it.
Nice to know there is some hope.
Please keep doing what you do! this cancer needs to be stopped and fast!
Blessings!