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Discussion Starter #1


most of our pictures of our girls that we post online look like the one above. But we have too many pictures like this:



or



Both my girls have Cystic Fibrosis (or CF for short). CF is a life shortening terminal illness that affects the entire body, but what most people know about are the lungs. Because that's usually what kills the person who has it.

Average life expectancy is all the way up to 35! which is a HUGE gain from just a few decades ago. i'm 35 and people my age were never expected to go to kindergarten. For the first time ever half the CF population is over the age of 18.

Anyway, my wife and i do 2 fundraisers a year. one is our walk and one is a bike ride that i do

For our walk we invite participants who can't be there in person to walk "virtually" on facebook.

https://www.facebook.com/PenelopeandAmelia/?fref=ts

for those that come to the walk, you get a t shirt to thank you for the $ you've raised. For those that can't attend you can make a small donation and receive your Tshirt here:

https://www.booster.com/apgreat-strides-2016

(that's an angel peep btw)

There's many many good causes out there. But please consider supporting ours. the CF foundation runs on a shoestring budget. over 90 cents of every dollar donated goes directly to medical research. So you're not funding a cushy office or "outreach". you're funding life changing drugs. and it's working.

Orkambi and Kalydaco are new drugs that just hit the market that are LIFE CHANGING for these kids. I believe we will see CF wiped out in our lifetime. I just need your guys help.

Thank you for your consideration. oh. and because i love showing them off. here's some pictures of my girls doing "normal" stuff :)



Here's amelia passed out on her 3rd therapy of the day. this vest shakes her to help loosen the mucus in her lungs so she can get it out and breathe









 

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I am in the same boat as you. I have a daughter with CF that just turned 16. She's been in and out of the hospital plenty of times in her life, but mainly for "tune ups". She doesn't qualify for the new meds yet, but I know they'll eventually get to her mutation type.

Good job on putting out the fundraising, that's not something I've been good about.

Our best to you and your family!
 

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I am in the same boat as you. I have a daughter with CF that just turned 16. She's been in and out of the hospital plenty of times in her life, but mainly for "tune ups". She doesn't qualify for the new meds yet, but I know they'll eventually get to her mutation type.

Good job on putting out the fundraising, that's not something I've been good about.

Our best to you and your family!
wow, how did i miss your reply!?

i'm guessing she's not F508del? they're making some pretty big strides with different combos for these kids who have the nonsense and less common mutations.

where are you guys from?
 

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My daughter has the F508del and 621+1G>T gene, which hasn't received the newer treatments yet. She is staying pretty healthy considering, so she isn't in urgent need yet.
We recently moved to the DC Metro area (Alexandria, VA) and she is treated at Walter Reed Medical Center. We really like the team there.



Jeremy
 
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