This community has been awesome, but i need your help again for my little girls.

[2k2wranglerx]

I'm sure some of you know but both of my Girls have Cystic Fibrosis (and some people on this forum have ties to CF as well). Every year i do a bike ride and raise $ for the Cystic Fibrosis Foundation. In the past the members on this board have absolutely blown me away with their generosity. I know there's a lot of worthy causes out there. But i'm asking this community for it's continued support. You guys are always awesome and beyond generous. And i thank you for your past and continued support.

CF is a terminal and chronic illness that destroys the pancreas and the lungs. We have a few members on here that actually have CF and a few who's children have it. I've spoken to a couple of them and they're incredibly inspiring.

As for my kids. Amelia is 5 and Penelope is 1. Penelope spent her first 3 months in children's hospital after she was born. That was a rough time for us. They kept her alive on TPN and Lipids through a central line that ran up to her heart. She didn't have enough bowel to digest her food.

that's how we spent 3 months. never more than 4' from her IV pole and monitors. we had a chair next to her crib and for 3 months all she knew was her crib or being held in the chair.

(with her sister amelia who also has CF and their mom/my wife)

Since then Penelope has had a pretty huge recovery. she's a fat, happy, crazy kid with absolutely no fear of anything except people who wear rubber gloves and nurses.

It's tough having 2 kids that statistically i'm supposed to outlive. But they have each other to lean on.

Amelia's doing pretty well also. Fighting some things that we saw coming. Typical CF cough. Starting to see some progression which is really hard. But she's 100% compliant to her treatment and we've never, ever, ever missed a therapy with her (3-4 a day for 5 years, both girls take 27 or so pills a day, 2-4 nebulized medicines as well as up to 4 vest treatments a day!!!)

Both girls had their lungs scoped this year and they look as well as can be expected. and we keep them active to try and keep them as active as possible to help clear the junk out of their lungs:

Anyway, on to the good news. We are looking at Gene therapy being a reality in 5 years! they're already doing some trials and it's showing a lot of promise. People are inhaling corrector genes that make the cells work properly... that's AMAZING.

Kalydaco and Orkambi are both correctors that show great promise for extending the life of people with CF and there's new combinations on the way.

People like you guys. Who have no direct ties to CF are single handedly funding cures for these kids. You're adding tomorrows by donating! The cystic Fibrosis Foundation actually purchased a lab and what they're doing is developing these therapies and drugs in house, then handing them off to the big drug companies to complete. What that's doing is taking the risk out of the game for the drug companies and it's leading to HUGE innovations.

This will be the Polio of our generation. We will see a cure for this.

Anyway, my fat butt will be riding to continue to raise $ for the foundation. more than 90 cents of every dollar raised goes to research. Not fancy offices for execs, not outreach, not awareness. It goes to funding the science. The Cures. The therapies.

Anyway, if you find it in your heart to donate my page is:

Pittsburgh CF Cycle for Life 2016: Mr. Ryan Dunbar - Cystic Fibrosis Foundation

http://fightcf.cff.org/goto/angelsandpeeps

Thank you for considering my cause and helping give my girls more tomorrows!

 

[2k2wranglerx]

btw, i've been on here a long time. but i rarely post. i just read a LOT of what you guys are doing lol.

right now i have a losi nightcrawler and an AX10 that my daughter amelia and i go out and use in the rock pile in the back yard.

thank you for your support and consideration

 

[2k2wranglerx]

Big day today...

Amelia started her first day of kindergarten... When i was born in 1980 kids with CF probably wouldn't even have bothered going since they weren't expected to live much past this age...

Now my little girl gets to go. And she has a chance at a real life because of people like you who gave.

Thank you.

 

[59sled]

Done!

My niece has CF.

I've watched the struggles she has gone through as a child and now as a Adult. She will be 21 yrs. old in a month and has been fighting it since 2. Just school in general is though for kids with Cf as they might miss a week or more at various times throughout one school year when they get admitted to the hospital. As my niece calls it going in for a check up. Now imagine a 21 year going to college and missing a week 2 or 3 times a year sitting in a hospital. Its tough. Maintaining a good grade level is brutal.


Also even the struggles her parents have gone through. Her dad has great insurance that and a great job that lets him have all the time off he needs while she is in the hospital. Even with her going to be 21, he will still spend the every night in the hospital that she is in it.

This CF disease did create a father/daughter bond like no other.

Good luck with the bike ride."thumbsup"

Keep your head up and stay positive as we all hope to turn CF from meaning Cystic Fibrosis to CF meaning Cure Found.

 

[2k2wranglerx]

Done!

My niece has CF.

I've watched the struggles she has gone through as a child and now as a Adult. She will be 21 yrs. old in a month and has been fighting it since 2. Just school in general is though for kids with Cf as they might miss a week or more at various times throughout one school year when they get admitted to the hospital. As my niece calls it going in for a check up. Now imagine a 21 year going to college and missing a week 2 or 3 times a year sitting in a hospital. Its tough. Maintaining a good grade level is brutal.


Also even the struggles her parents have gone through. Her dad has great insurance that and a great job that lets him have all the time off he needs while she is in the hospital. Even with her going to be 21, he will still spend the every night in the hospital that she is in it.

This CF disease did create a father/daughter bond like no other.

Good luck with the bike ride."thumbsup"

Keep your head up and stay positive as we all hope to turn CF from meaning Cystic Fibrosis to CF meaning Cure Found.

Glad to hear she's hanging in there and pursuing college man! that's awesome!

Ya tuneups are going to be tough. Last year we spent 74 days in the hospital with penelope (the youngest) and at the same time Amelia developed a crackle in her left lung. Which means there's mucus trapped and IV antibiotics were going to be the next step.

Anyway, the hospital reserved us a double room so both kids could be in the same room (since they were both going to be in patient). We upped amelia's PT's to 4 times a day plus extra manual PT and some pretty hardcore oral antibiotics. Luckily we were able to knock out the mucus without ending up inpatient with both!

I know those hard hospital stays are coming for her. That's what i dread the most (other than the obvious).

Thank you so much for the donation man! Next time you see your niece tell her adults like herself are what inspire us parents of kids with CF. And that's honestly true.

 

[59sled]

Glad to hear she's hanging in there and pursuing college man! that's awesome!

Ya tuneups are going to be tough. Last year we spent 74 days in the hospital with penelope (the youngest) and at the same time Amelia developed a crackle in her left lung. Which means there's mucus trapped and IV antibiotics were going to be the next step.

Anyway, the hospital reserved us a double room so both kids could be in the same room (since they were both going to be in patient). We upped amelia's PT's to 4 times a day plus extra manual PT and some pretty hardcore oral antibiotics. Luckily we were able to knock out the mucus without ending up inpatient with both!

I know those hard hospital stays are coming for her. That's what i dread the most (other than the obvious).

Thank you so much for the donation man! Next time you see your niece tell her adults like herself are what inspire us parents of kids with CF. And that's honestly true.

You're welcome.

Stay positive and keep loving them kids.

Biggest thing I noticed with my niece is don't treat them any different than any other kid. Let them do the things they love to do. Even if its not the best thing for them due to the CF.

This pic was from 2 years ago though. From the time she was 5 til this pic, we were always camping and riding dirt bikes in the desert. Doc said its not the best for her sucking in the dust. But when it puts a smile on her face, sometimes that's whats most important. They need to enjoy life still.

 

[2k2wranglerx]

Thank you everyone who donated and supported me this ride!!!!!!

My personal page came out just shy of $12,000!!!!! and our team was around $21,000!!!!!

I can't thank you guys enough. It's always amazing how generous people can be for kids they've never even met. My girls will one day appreciate what these donations mean. And hopefully they'll be benefiting from the treatments YOU guys all paid to develop!

Thank you so much! I didn't take many pics. But i did get decorated by my girls at the finish line:

our route:

and my girls and their "pop pop"

Now back to reality tomorrow. 4 hour clinic appointment. Amelia has a junky cough so i'm pretty worried about what the Dr is going to say. Hoping we don't end up admitted.

Thank you all for giving my girls a chance!!!!