Why I Fundraise / CF Update / CiCi's CF Fundraiser Results

My last CF fundraiser at CiCi's Pizza went VERY WELL!!! It was a FANTASTIC night and a lot of fun!! We raffled off 2 tickets to an Indians game of your choice, and it was a BIG hit!! We normally raise around $100-$150 in the raffle, but this time we raised $230!!! BIG THANKS to my awesome Kohl's associates who helped us raise another $500!!!......Rebecca, Jill, Sharon, and Patty!!! Thank you girls, you all ROCK!!!

That puts us at $3,000 raised from Kohl's so far this year!! Thank you KOHL'S!!!! (for some reason they are not showing on my Great Strides page, but they are there;) So all together with the 10% from the receipts, the total for that night will probably be around...$800!!! WOOHOO!!!! That's awesome!!!

Thank you so much to all who donated or bought tickets!!! There were some very generous people who threw $10 or $20 bills in the donation jar and didn't even want any raffle tickets! I'm always amazed by such generous people! BIG thank you to the winner of the raffle as well!! I won't mention her name since I didn't ask her if I could, but I was glad she won, b/c she bought the most tickets...$20 worth!! CONGRATS on winning if your reading this;-)

What made the night even better was I met a couple of people who knew somebody with Cystic Fibrosis! One told me of a friend or relative(I can't remember now, I want to say she was her niece;) that was in her 20's with CF and had 2 kids and was doing well. She had a little bit of a hard time with the pregnancies, but that's to be expected. Another told me of her friend, who I believe was in her 20's as well, who was also doing well. Stories like these give me hope for Lil' Chris' future:) Thank you ladies for sharing your stories with me and for your donations!!

As for an update on Lil' Chris....he is doing well. He still has that wet cough, but it's not as often as it was. I'm praying it goes away before needing an antibiotic. I'm always cautious to put him on an antibiotic if he doesn't need it b/c the more antibiotics he takes or is on, the sooner his body will start to reject them. There is only so many antibiotics or drugs, and once he becomes resistant to them all.....well, that's when he will get more and more lung infections and irreversible lung damage. The next step would be a double lung transplant. Then starts the waiting game and all the questions...would he get the new lungs in time?? Would his body reject the new lungs?? Even with new lungs, he will always have CF.

Many CF families can relate to this thinking. We all know it's a POSSIBILITY for their future. All we can do is have faith, hope, and trust in God, and pray that a CURE if found SOON!!!!! I pray that God gives Chris and I the KNOWLEDGE of when to call and get him put on an antibiotic...or any big decisions that may be in his future.

When Lil' Chris was first born in 2007, they told us that the life expectancy for CFers was 36....today it is 37 1/4!!!! We are getting closer and closer to a CURE or a better control of this horrible genetic lung disease EVERYDAY!! Now you probably see why I do all the fundraising I do, why I ask/beg for donations, why I organize and put together a Great Strides walk every year...all for "A Cure 4 Lil' Chris" and ALL CFers!!! I'M GONNA DO ALL THAT I CAN, TO SEE A CURE IN LIL' CHRIS' LIFETIME...I HAVE TO!!!

My next CF fundraiser will be on Thurs June 30th from 5p-8p at CiCi's Pizza in Wooster. The raffle will be the same as last time, 2 Indians tickets to a game of your choice. Hope to see you there!!

Thanks again to everyone who has donated this year and in the past! We WILL see a CURE in Lil' Chris' lifetime!! I just know it!!
M
PS. If you haven't donated yet and would like to, click here:) Even though the walk is over, we'll always still take donations:) Thanks!

Rachael Update/Link to Become an Organ Donor

For an update on how Rachael is doing post transplant, click here. Please keep her in your prayers. She has had a set back, but that is common so close to transplant. To be clear, Rachael does not have CF, but she does have a rare lung disease which is close to CF. As I have mentioned before, a double lung transplant is the last resort for CFers and others with rare lung diseases.

PLEASE BECOME A DONOR TODAY!!!

Click Here to find out more about how to become an organ donor in your state and how to ensure your wishes are carried out upon your death. If you decide to be a donor or already are, Click Here to send a family/friend notification card. For those who know my email address, please let me know (or send me a notification card) if you made the decision to become a donor.

Thanks,
M

Rachael got the Call!!/Organ Donation

Rachael Wakefield on BBC North West Tonight from Live Life Then Give Life on Vimeo.

This is Rachael a few days ago. Today...SHE GOT THE CALL!! She is still waiting to hear if the lungs are good or not. I pray that they are, b/c she REALLY needs them!! Please say a prayer for Rachael, her family, and the donor's family as they are grieving.

Now you can see why it is sooooo important to become a donor. You can save up to 7 lives that are desperately hanging on like Rachael. Please become a donor today and spread the word!!

Thanks,
M

Tumbleweed Fundraiser for Cystic Fibrosis

This Tuesday, March 9th we are doing a fundraiser at the Tumbleweed Restaurant in Wooster to help raise money for a CURE for Cystic Fibrosis. All you need to do is click the link below, print the coupon, and then bring the coupon in to the Wooster Tumbleweed any time on Tuesday March 9th, and then 10% of your bill will go towards a CURE for Cystic Fibrosis.
Tumbleweed Coupon
For those who are new to my blog, Cystic Fibrosis(CF) is a life threatening, genetic disease of the lungs and digestive system. You can go to www.cff.org for more info. My 2 1/2 year old son, Lil' Chris, has CF and his life expectancy is only 37. Take a look at your child and imagine if he or she only had about 30-40 years to live or less. Would that be enough for you?? Of course not. That is why I do these fundraisers, because CF is not funded by the government like other diseases. It's up to the parents, family, and friends of those effected by CF to raise the MUCH needed money to fund VITAL research for better meds, and hopefully one day.....a CURE!!!!! We keep getting closer and closer to a cure, but it costs LOTS of money to develop these new drugs and test them before they can be approved by the FDA and then released.

Please help spread the word about Tumbleweed and all my fundraisers to help raise money and awareness for Cystic Fibrosis and Organ Donation. In the final days of those with CF, a double lung transplant can add 5-10 more years onto their lives, but this can't happen unless a donor is found. It's very important that everyone become a donor. All you have to do is get it marked on your driver's license and then you can save up to 7 peoples lives. So many young people die from CF just waiting and waiting and waiting for a matching donor. Please become an organ donor today and spread the word as to how important it is.

My next few fundraisers after Tumbleweed, are at CiCi's Pizza in Wooster on March 25th, April 22nd, and May 27th from 4pm-8pm. Come and join us and just put your receipt in the jar by the register and then 10% of your bill will go towards a CURE for Cystic Fibrosis. I will be at each one and we will be having a raffle each time too. Spread the word!!

We are also having a walk for Cystic Fibrosis on Saturday, May 1st at 9am if you would like to join us that would be GREAT!! It will be held at Hewitt Cowels Pavilion of Ida Sue School(by the soccer fields). The address is 266 Oldman Rd. in Wooster. Come join us for a day of fun, free food, and lots of prizes!!!

Thank you everyone for checking out my blog, and feel free to check back often to see more fundraisers for Cystic Fibrosis in town and to get updates on Lil' Chris:)
M

Harmful Fumes for CFers/New CF Mom Blogger/Organ Donation/Decision to have another child or not

Click here to check out the blog of a new CF mom I found thru Ronny;) Well, she's not new to blogging and her son is 14 months old... but she is new to me;-) lol

Ronny had a GREAT post the other day on his blog. When doesn't he have a great post though;-) The post was actually from his girlfriend, Mandi. Click here to get the whole post on his blog.

These are some very interesting things that I didn't know(except about the smoke;) and that I feel ALL CF families should know, especially us who have young CFers who can't tell us when their lungs hurt. Here is the post from his blog....

Caution: Harmful Fumes Ahead (for CFers)

On Thursday evening, I decided to paint my nails. I'm not much of a girly-girl, so I rarely partake in this form of pampering, but for whatever reason, I decided Thursday night was the night. Ronnie and I were watching TV, I jumped up, grabbed the the nail polish bottle, plopped back down next to Ronnie and began painting. Two nails in, Ronnie moved to the other chair. I didn't think much of it. After finishing my manicure and waving my hands in the air (who knows if that actually dries your nails faster), I moved to get closer to Ronnie in his newly selected location. As I started to get close, Ronnie lovingly said, "just so you know a little something about me," he paused, "nail polish really irritates my lungs. "IT DOES?" I replied, feeling a little bad for not knowing. How would I have known? I never paint my nails. It doesn't bother my lungs. I just didn't think about it. But after he mentioned it, it seemed like a no-brainer.


I decided to compile a list of things I know of that irritate Ronnie's lungs, in case you have little ones that can't/won't speak up:


-Smoke - this seems like an obvious one. And sure, if someone is blowing cigarette smoke in my face, I notice, but there have been many occasions where Ronnie will say, "someone's smoking, let's move" and I haven't even smelled it. This goes for other kinds of smoke also. Smoke from cigars, pipes, bon fires, burning meals, etc. After a night with a lot of smoke around, Ronnie will often cough up blood.


-Car fumes - When we're running or walking on the sidewalk of a busier street, Ronnie often complains of how the car fumes make his lungs feel and it often irritates his lungs making him cough more.


-Air fresheners and scented candles - Bathroom aerosol sprays, plug-ins, regular old candles, these often make Ronnie's lungs feel irritated and "itchy" in his words. If you're looking to "freshen" the air a little try potpourri.


-Perfume - If someone has too much perfume on (not just when spraying it) it really tightens up Ronnie's lungs. I'm not sure there's any way around this other than cutting back on the perfume usage. I do wear perfume and Ronnie has yet to complain, but when I wear it, I go light.

These are the only offenders that I know of. I didn't realize how much more sensitive CFers' lungs were. I hope this list helps.


If you have any others, please leave them here.


P.S. If you haven't made it over to www.naturemade.com yet to see Ronnie's story, check it out. I'm super proud of him :)

Click here for another great post by Ronny about being a good CF mom:)

Here is one more great post by Ronny about making the decision to have more children if both parents are CF carriers. Be sure to read all the different comments too;-)

I think that's enough for now...LOL ;-) Let me know if you have any questions,
M
PS. Lately on Young & the Restless(yes, I'm addicted to a soap opera;) they have been talking a lot about organ donation. I'm so glad that they are, b/c it is SOOOOOO important for CFers. Most CFers will need a double lung transplant when they get older. Please, Please, Please become an organ donor TODAY. Don't wait another minute! You could not only save 1 life, but you could save 7 lives!! Isn't that a great way to be remembered? I hold comfort in knowing that someday I may save a life or two or 7. Click Here to find out more about how to become an organ donor in your state and how to ensure your wishes are carried out upon your death.

Ok, now I'm done...for real this time;-)

Great Post

I thought this was a great post that Nate's father put on his blog.

Successful Surgery!!

Yea!! Tricia's surgery was a success!! Thank you all for your continued prayer for Tricia. Wow, her first day without CF lungs! Must be so exciting! After all, she has put up with those CF lungs her whole life. And now, to not have them anymore must be the best thing ever!!

As a CF mom, I've read many books and kinda know some of the things Tricia may go through now after her double lung transplant. It's not going to be easy, but she is strong! If she can get through 25+ years with CF lungs, then she can put up with anything! Especially with God on her side, and all of us praying for her : )
Please continue to pray that she has a fast recovery and all goes smoothly. Please pray for the donor family as well. I know they are grieving right now, but once they find out that such a joyous young lady's life was saved, I'm sure it will help relieve some of their pain.

Thanks again for all your prayers!
M

Again, we ask for prayer for Tricia!

I'm beat tonight & was planning to hit the sack early & catch up with you all tomorrow but at the last minute I remembered that Nate had posted earlier today about another possible lung match for Tricia. With all the running around I'd done today I nearly forgot to check back! I had to come back out & hop on my husband's computer to check & see if there was a new update. Praise God! She is in surgery now, amazingly on Nate's birthday, and my thoughts & prayers are with them. I hope you will join me in praying for Tricia as she is in surgery, Nate & family as they wait, the surgeons & attendants caring for Tricia that God would guide them & of course for baby Gwyneth that her Momma would be returned to her healthy & whole to guide her & watch her grow.

Ephesians 3:19-21
19and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God.
20Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, 21to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.

D.

Organ Donation

Well, if you haven't already read Tricia and Nate's blog yet, the lungs were "no good" (as he puts it). Thank you all who were praying that she would get her new lungs. I know she will soon, I just have a feeling. Unfortunately it didn't happen this time, but there is always next time. Please continue to pray for Tricia and the grieving family. Hopefully they were still able to save someones else's life with their other organs.
Are you an organ donor? I know I wasn't until I started reading Nate's blog. He encouraged me to take that very important step. I know that someday my son will most likely need new lungs just like Tricia. I encourage everyone to be a donor. You could not only save 1 life, but you could save 7 lives!! Isn't that a great way to be remembered? I hold comfort in knowing that someday I may save a life or two. Thank you Nate for opening my eyes =)
Nate made it so easy for me to find out how to become a donor in my state. He had a link that took you to it. It also had a postcard thing that you could send out to whomever you want, so they know that your wish is to be an organ donor. The postcard can also encourage others to become donors as well. I'll try to find that link for you if you are not already an organ donor. Please, please, please help save a life!!!

Ok, I found it. Yea!! Click Here to find out more about how to become an organ donor in your state and how to ensure your wishes are carried out upon your death. If you decide to be a donor or already are, Click Here to to send a family/friend notification card. For those who know my email address, please let me know (or send me a notification card) if you made the decision to become a donor. For those who don't know my email address, please leave me a comment letting me know. I'd love to know that I helped you make this very important decision.

Thanks in advance,
M

Please Pray

I'm pretty sure most of you that are reading our blog are also readers of Nate & Tricia's blog, Confessions of a CF Husband, so this post is probably telling you something you already know. They got "that call" & I can only imagine what this long awaited night feels like for them. I won't speculate on what I think they might be going through. No one can ever really know how another person thinks or feels at a time like this. I just feel led to pray for them, that all the details come together so Tricia will get her new lungs tomorrow, that God will guide the hands of the surgeons, that the surgery will be perfectly executed & that Nate, Tricia & their families will feel God's comforting presence with them during the process. I am also praying for the family of the donor, that God would comfort them during this difficult time & that they would know Him or come to know Him through their experience. Who knows! Perhaps Nate & Tricia will have the opportunity at some point to lead them to the Lord.

So now that I've shared what's on my heart tonight I will go to bed early for a change & continue my prayer time there. Thanks & please remember to pray for Nate & Tricia tonight & tomorrow! D.

About Lil Chris

This is my nephew who we affectionately call Lil' Chris.

Adorable, isn't he? We all just love him so much...



Which leads me to the purpose of this blog...

Lil Chris was born with a genetic disease called Cystic Fibrosis. In short, CF is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). I will expand more on this later. For more information now, click on the link above.

My goals with this blog are (1) to raise awareness about Cystic Fibrosis and the importance of organ donation and (2) to ask for your prayers for Lil Chris and the scientists who are searching for a cure. Such amazing strides (you'll see this mentioned again later) have been made in the research & treatment of CF just in the past 10 years that I firmly believe, through the hand of Almighty God, a cure is possible in Lil Chris' lifetime.

Thanks for taking the time to visit this blog. I look forward to sharing this story with you in the coming weeks.

D.

My first encounter with CF