August 8, 2008

CF Ice Cream Social

A week ago, our local CFF chapter had an ice cream social for all team leaders who participated in Great Strides. Teams who raised the most funds received prizes, and we picked up the hard copy picture of our Team photo.

We even received a certificate! Here's Dan educating Timothy about raising funds for CF...

And here's Sam having fun...

She's obsessed with tennies. What can I say?

One thing that saddens me a bit about CF is that traditional support groups don't exist. My own personal theory for that is this...

  1. In CF circles you will often hear "the 3-foot rule". That is the recommended distance that CF-ers keep from eachother. This is to prevent cross-contamination amongst CF-ers. That stops anyone from putting a bunch of CF-ers in a room together.

  2. There aren't that many who have CF. There are only 30,000 in the U.S (compare to 1-1.5 million who have Autism). Another way to look at it is births. CF occurs in 1 out of every 3,900 births. Autism occurs in 1 out of every 150. When a child is treated at an accredited CF facility, they are placed in a registry that holds and compares all data. Right now we have about 24,000 registered, which means way too many aren't getting treated properly. There are almost 150 treatment facilities which means an average of 160 families treated per city. And San Diego has 3 facilities, so we are divided even further here. Although if I had my way the 3 treatment facilities would have a joint support group!

  3. But then the 3rd factor comes into play. Parents don't want to have to figure out childcare for their special needs child in order to attend a regular support meeting. And early on in life so many CF-ers are healthy enough that parents aren't feeling that "need" for support.

So in light of all that, I was looking forward to meeting some CF families. I didn't meet many, but I did learn 2 stories. One was a 10 yr-old boy who was just diagnosed with CF last year! His mom said he couldn't put on weight, but that he hasn't had any lung issues. Enzymes are helping him a great deal.

I also met an adult woman (thinking she was a mom of CF) who has CF. Her 2 yr old son was playing with Timothy. This is really a beautiful miracle that is starting to happen more often. CF causes more reproductive problems in men than women, but in the past women were often not healthy enough to carry babies full term. I'm hearing more and more of these stories, and they make my heart soar! And a genetics note: Anyone with CF can have children with someone who is not a carrier and because the CF gene has to come from both mom and dad, any kids they have will have 0% chance of having CF.

By the way, I have found some wonderful blogs of some amazing CFers, and really feel like I have found a supportive community. I'm grateful for technology!

I'm throwing this picture in to see if you are still awake after this entirely too long post!!! Dan & I had a little fun at the party too!

6 comments:

jill said...

so i'm a little behind!! we moved last week and just now got the dsl hooked up. i'll do better!! looks like you guys had a good time. i saw a hgtv show where they re-did a room for a CF boy, where he could have a "fun" place to have those treatments done. it was pretty neat.

Christi said...

Dan, smiling in a picture...can it really be true! :)

Stephanie's Mommy Brain said...

I'm glad you've found virtual support groups! Fun pictures.

Keith said...

Thanks for sharing, it was not long or boring!

Beverly said...

Hello, I came hee by way of Lauren's blog. I have a two-year-old granddaughter with CF. It's interesting to read everyone's experiences.

kia (good enough mama) said...

Oh, I'm glad you've found some fellow cf-parents to commune with online at least. Very interesting facts you laid out in this post. I would have guessed that cf was much more prevalent...