Friday, June 25, 2010

Adding Tomorrows for People with Cystic Fibrosis

Working together, we can continue to add tomorrows every day to the lives of all people with CF!

We were hoping 2009-2010 would be a better school year for Nick but that hasn,t happened. I’ve started this letter several times but the words don’t seem to come this year.
I want so bad to say that Nick has had a wonderful year and things seem to be turning around for him. I can’t! The last few months have found him in the hospital twice. The last time he got a port put in instead of a picc line. We are hoping that will work better for him and it can be left in for a couple of years instead of a few weeks. It was kind of scary for his mom learning and excepting the fact she would have to put the meds in through the port instead of a picc line. So far it seems to be going good. At least this will stop the scaring on his arms. Nick said “people probably think I’m a drug addict when they look at my arms.”
On the other hand we have heard promising news from the Cystic Fibrosis Foundation and the new meds that are in their second and third trials. When you listen to the CEO of the foundation, Dr. Robert J Beall, he gets so excited about the things coming down the line you can’t help but get excited too! Dr. Beall and Dr. Francis S Collins director of the National Institutes of Health and the co-discoverer of the CF gene, recently spoke to the US Senate about the lessons learned from the CF community’s successes in medical research that can map the way for other diseases. Dr. Collins also wrote a song about CF with the last line, “I want the story of CF to be history and you read about it in a book.” It takes money for research and we are asking help again to raise money for Cystic Fibrosis and for hope for the many kids and young adults with CF.
Last year we ask for you to send this on by letter, email and or facebook to anyone you thought might want to help. Some of you did and we appreciate that very much. The people you know value your opinion and if you think it is important enough to send on that will make them consider it. It is hard to ask for money even for someone you love so much.
It is the same as in the last couple of years if you want to give to the Cystic Fibrosis Foundation make your check out to Cystic Fibrosis Foundation and we will send it on to the Heart of America Chapter. If you want to give to Nick’s medical fund make your check out to First National Bank and in the memo space put Nick Craig Medical Fund. If you do it that way you can take it off your income tax as a donation. We appreciate anything and everything you do!
We thank you for your thoughts and prayers!! With your help, we can make CF stand for “Cure Found!!”

Nick and his family
Jennifer, Allie and Hannah
Dennis and Pat (2210 N Monroe, Hutchinson KS 67502)
Brad, Jacque, Katelyn, Jake and Claire
Matt, Joy, Abigail, and Daniel
Richard and Danny
Spencer, Melissa and family

Things that might interest you.
Pat’s blog


Wednesday, June 23, 2010

Summer and Cystic Fibrosis

Summer can be hard on kids with Cystic Fibrosis with the heat and humidity. The humidity makes it harder for them to breathe. When Nick was little the Dr. told us he needed central heat and air because when he goes room to room and the air is different his body has to adjust to each room. It is amazing how much I take for granted in my daily life with my health. I only need a minute to sit back and look around to find someone else (other then Nick) that has more challenges then I do. Life isn't fair but that is hard to say to people like Nick that feel like I have it pretty good and that is easy for me to say.

Nick was suppose to have a counseling appointment this week and I haven't yet asked him how it went. I'm not sure if I should ask at this point. I have thought for a lot of years he needs someone to talk to that is not in any other part of his life, to say whatever he wanted about anything and everything. As I've said before you need to walk in another persons' shoes before you judge what their choices are. I have to remind myself of that more often then not.

Nick is a good kid I don't want anyone to think different. Life has just been one tough thing after another for him. Life has changed in the last couple of months for the good I hope so things may turn around for him. You need positive things going on in your life or you tend to dwell on the negative things to much. I wish Nick could find a part time job to fill some of his time. I know that working at ESSDACK has been a big positive in my life. There are always fun, positive vibes going on there. ESSDACK is where the learning never stops!