a different kind of perfect

i'm a mom...on a mission...to enjoy life everyday...appreciate the little moments...try not to get so easily annoyed...raise my kids with a faith legacy that leads them to continue to be amazing people...and to make my husband feel as special as he makes me feel.

What is Cystic Fibrosis?

CF is an inherited chronic disease that affects the lungs and digestive system of about 30k children and adults in the US (70k worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that both clogs the lungs and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food. [www.cff.org]

Sunday, May 3, 2015

Great Strides 2015 Walk

Here we go, starting with a Dean update:  The kid is awesome, he just turned 5, loves, loves, loves to build legos and bounce on the trampoline and run around chasing Cali, Owen, Evie.  He loves to count, read his sight words and can bust a move!  On the medical side, he's growing, doing his treatments multiple times a day and recently spent hours at the hospital with labs, X-rays, clinic appt and his first time doing a Pulmonary Function Test.  He hasn't mastered the technique but scored high, which indicates his lungs are staying healthy.  

May is Cystic Fibrosis Awareness Month and we're walking again this year as we celebrate another great year and currently anxiously awaiting some news from the FDA about a drug that is targeted toward those with Dean's mutations (although for ages 12+, we are excited for what the future holds for our superhero).  

We will be at the Orland Park walk on May 16th at 9:30 am again at Centennial Park and hope you can join us!  If you will be there, please register here by clicking on JOIN OUR TEAM:  register here

Hickory Creek, one of the amazing schools in our district hosts a CFF walk each year.  Since our last update, we've been partnering with them to make their walk this year a community event.  Please look for info from the school coming soon for their May 22nd event and how to donate to the CFF through the school.

If you can't join the walk with us this year, but want to donate:  http://fightcf.cff.org/goto/eatpraydean

Thank you time!  Jim's awesome cousins and family from out west are walking for Dean next weekend and a wonderful friend from college will be walking in North Carolina the same day of our walk here.  Additionally, a great big thank you to the Delta Phi Epsilon ladies at UIC who are raising money for Eat. Pray. Dean this year; above and beyond and we're thankful for all of you!

Finally, if you haven't seen the video that Dean was a part of, please take a few minutes to see Dean in action: https://www.youtube.com/watch?v=DySt5tLi4G8

With gratitude,
Jim & Erin and Cali, Owen, Evie & Dean

Other upcoming events
Night at the Windy City Thunderbolts - July 23rd (for more info email:  vizzabe@comcast.net)
CF Cycle for Life - Aug 22 - 30 or 60 miles at Kuijper’s Farm in Maple Park, Il.
CF Climb for Life - Nov 8 - 58 flights, 1200 steps at 300 N. LaSalle in Chicago (Delta Phi Epsilon - we're looking forward to seeing you there)!

Dean, 5

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