CCKT

 Shortly after Violet's diagnosis, as our acceptance period began, I was contacted by another mother of a CF child.  The social worker at our center had suggested I contact another family, and I kept telling her I would..one day. I knew it could be beneficial, but I guess I was thinking I would wake up and this would all be a bad dream. So the longer I avoided her and all things CF, the better....

 There are about 150 people in the Toledo area living with CF and out of all the kids our pediatricians treat, only 2 other kids have CF.It was actually our pediatrician, who had a lady call me, before I got back to the social worker at the clinic with an answer. Ready or not, I was glad she called.She has an older child with CF and was able to give me some advice and made it all seem a lot less scary. After talking with her a few times I started paying attention to the flyers in the clinic for fundraisers and benefits and such. I figured the doctors and nurses can give me facts til their blue in the face, but only another mother can truely understand and know what it's like to raise a child with this disease. Since last Winter I have met a handful of other wonderful parents, and although we are unable to ever hang out as families, I communicate with the other moms quite often.

 Over the weekend, Andy and I, along with my in-laws and my mom attended a wonderful event for another local CF family. (Ava, Violet and Kylie stayed home with Papa)

Carson's Crew and Kennedy Too is the name of the team supporting a Toledo area family with two kids living with Cystic Fribrosis. Carson, is 5, was born prematurely, and required a long stay in the NICU. Kennedy is 3, and (just like Violet) was diagnosed through her newborn screen at 10 days old. They both are healthy now,but require enzymes to digest food, and do breathing treatments with different respiratory meds like Violet. However, since they are older, they wear a vibrating vest during the nebulizer treatments to break up any mucous, the same effect as when we pound Violet with her " bonker".

 Said "Bonker"

Demonstrating how to use it on herself

Notice that her cute little shirt says "Ellissa"

 



On Saturday we drove out to Gibsonburg,where CCKT held their 4th annual reverse raffle. They welcomed over 400 people and after serving a delicious chicken dinner had a live auction, a few tables of silent acutions,as well as numerous raffles going on.There were really great items up for bid, that sparked a lot of interest,and they were able to really kick butt! Just for this event alone, they raised over $50,000, all of which goes right to the CF Foundation for further research for our darling kiddos! This is just one of the many events CCKT holds every year, but only the 2nd event of theirs we have attended. It is very inspirational to see so many friends and family members of Carson and Kennedy work together to put on such a great event and we are so, so, so greatful they raised so much money. Having fundraisers, benefits and especially the annual Great Strides Walk in cities across the USA, helps individuals raise money that is donated directly to the CF Foundation. The CFF does not receive any government funding, so it relies on donations from generous people all over the country.Without such events, there would be no more research, no drug trials and no steps closer to finding the cure for Cystic Fibrosis.

*If you would like to be kept up to date on local events you can LIKE our local chapter,
the Metro Detroit Chapter of CFF on facebook or click on the link below
http://www.cff.org/chapters/detroit/

 Smiley girl

Hiding up on Kylie's bed

 

Sisterly love, as always