my fat *** is riding my bicycle to support CF
if anyone would like to support, i'm trying to raise at least 180 bucks to support the cystic fibrosis foundation.
A 5 dollar donation gets my gratitude :)
A 10 dollar donation gets an Amelia's angels bracelet
A 20 dollar donation gets an Amelia's angels tshirt (size xl)
I want to thank everyone for all the support for previous events. I don't mean to keep whoring the forums for donations. But i'm going to ride 50 miles to support...
Amelia says thank you! (for those that don't know, Amelia is my daughter and has cystic fibrosis)
just ran across this pic on my wife's facebook. She has an awesome attitude. even with all the meds, therapies, and Dr appointments. It never slows her down one bit.
the wrist bands:
the t shirts
her creon... around 900 pills a month of that medication alone when she eats (6 pills of just that 1 drug at every snack or meal). she also takes special vitamins every day, 2 doses of albuterol when we do PT, and a dose of pulmozyne at the end of the night (to help break up the mucus). Plus 2 types of antacids in the morning and afternoon.
when she's sick add 2 more PT treatments in plus 2-3 inhaled antibiotics (and sometimes IV if she gets sick enough).
Forgot you were involved with CFF.......we've talked about this before. Good luck man, I'm also involved.
My son is named after one of my very first CF patients. Much respect for families who deal with the this.
Did a huge project on CF back in HS my senior year. A TON of respect to the families who deal with this, it's no easy task, that's for sure.
Thanks for the support guys. that's really cool about your son too. That patient must have left an impression... one thing I've noticed is our cfers have a spirit about them that's hard to describe... For kids who don't have entire lives in front of them, they certainly live every day to the fullest...
As far as the fundraising.... Approaching 1400 bucks!!!!!!!!
I'll be posting updates/pics/etc from the ride in this thread. I'm going to try and take the gopro and film anything interesting too.
Thank you so much everyone! the support has been overwhelming!
Hey Guys. I just wanted to update this thread.
First off. Thank you to everyone who's supported Amelia and myself. I've never felt so blessed to be part of a community.
2nd. HOLY CRAP. i'm up to $2605!!!!! my team is up to $4055!!!!
I never thought we'd be anywhere near that! Its an awesome feeling knowing you guys are behind us. and I know one day Amelia will understand and appreciate what that means.
update on the kiddo. took her to the lake this weekend. had some good and bad times. she (as always) had a blast. But two nights in a row we were up with digestive issues. Her and daddy hung out downstairs and watched the lion king from 3 am to 6 am both days. it kills me to see her in pain. My wife and I at times have to guess on how many enzymes she needs. she gets 6 per meal but they only last 45 minutes. and she wanted desert both days. Trying to get calories into her we always like when she eats desert, but we guessed wrong on how many extra enzymes she needed (too many or too few end in the same result).
and she snuck into her tent during therapy... she's not hard to find... just follow the singing and the tubes lol
Here's our friend's little girl Leighton who also has CF and who's about 2 weeks older than Amelia...
she spent the weekend in the hospital. she had an intestinal blockage (which is not uncommon at all). they had to do a GI tube (I think hat's the right term) down her nose to get the laxatives and vitamins in. she also was just diagnosed with Cystic Fibrosis caused liver disease. All these things are real possibilities with Amelia too.
So that's all that was running through my mind when we were up in the middle of the night.
Just an update.
I'm up to 2675 and my team total is currently 4750! I'm pretty sure we'll hit $5,000 by the weekend! Thank you everyone who donated and supported us. I know I sound like a broken record but I mean it. Weds there's a happy hour to benefit the ride. it's at OTB (over the handlebar) in the south side (Pittsburgh). if anyone comes out i'll buy ya a beer!.
update on the kiddo... not really good news. she got a cold last week. and while she has almost beat the sinus congestion part of it. She's developed a pretty nasty cough... and that's BAD news for CF kids. i'm calling the pulmonologist this morning and i'm anticipating her going in to the hospital today. hopefully just a visit. But we'll see. if her lungs don't sound good it'll be chest xrays and inhaled antibiotics... hopefully no more than that. we're already doing 3-4 vest treatments a day to try and knock it all loose.
we almost have that pacifier kicked, but when she's sick it's hard to say no...
So I just wanted to give a final update.
I was the number 2 fundraiser at the whole event. my team (basically my mom and I) raised $5240 and she was the number 3 fundraiser. our team was the second highest team as well!
the ride raised approx. $60,000.00 in it's first year!
First off. Thank you all again for donating. I know I've said it 478 times already. But it means a lot to me.
secondly. the ride report. lets just say you guys got your moneys worth. it was BRUTAL. I swear to god it was one giant hill. the ride was picked in relation to the start/end facility. not so much the terrain. it took me 6 hours to complete the ride. Absolutely brutal. actually it was too brutal. I think it's going to hurt our attendance next year. But that's a different story for another time.
anyway. I drank 2 liters of water, rode for 6 hours, and couldn't walk up the stairs the next day lol.
here's some pics from the event. (we forgot to take a team photo lol)
my mom (on left) and Christine (our 3rd teammate) finishing
one of the signs at the finish line (had Amelia and I on it)
I cant remember her name. But she sponsored the first rest stop. her daughter died 2 years ago at the age of 32.
my buddy shane. his 8 year old daughter Sadie has CF
such a weird disease. despite us and our wives being friends, we can't get the families together since CF kids can't be around each other...
a little cfer (you can tell by the lay and the button. that way other people with CF know to keep their distance.
live music, killer BBQ, Lots of beer at the end... if anyone is interested in joining my team next year please let me know!!!!
and thanks again for all the support!
Sounds like you had a great ride making some money for a great cause. My wife and one of my great friends has MS and we did the Bike MS ride in our area back in June (HOT HOT HOT). We did the 75 mile route and this is the first year we have been on road bikes since being a teenager. Our team raised nearly $15,000 for it!
I hope your work and dedication helps find a cure for it. MS is having some great medical advances that give my wife hope that a cure can be found in her lifetime.
One of our rest stops was run by Boy Scouts and they were valets for our rides (they held them while we got drinks, snacks, breaks, etc). VERY cool. One of them has MS too. But he can't ride because it affects his balance. We told him about recumbent trikes that he could ride and arranged for one of our triathlon friends to show him one and let him ride. The look on his face was priceless.
Thank you for supporting a worthy cause and I wish you continued success in your rides!
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