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]

Tuesday, May 29, 2012

Happy 4th Birthday Evie Dorothy!

What a week!  After an amazing Great Strides celebration last weekend, we celebrated Evie's 4th birthday on May 21st.  We had a playdate, tie-dyed shirts with Owen at school, opened some gifts (she loved her new pet shop toys and her very own gumball machine).  Evie was an easy, easy baby who smiled non-stop, a true gentle little one.  Slowly she is turning into an independent, self-confident, amazing little girl with a passion for everything athletic.  She'll sit down and play a game with you but would much rather play tag, run with dad or ride her two-wheeler, which she taught herself how to do last fall because she was tired of waiting for me to get outside.  She never ceases to amaze us, has a way of figuring things out if she doesn't know how to do something and doesn't like to wait for anyone when she knows what she wants.   She loves to be outside and ended her fourth birthday with a 1/2 mile run with dad (while sporting her new running shorts)!

Evie has been taking Taekwondo since December 2011 and tested during this busy week for her yellow belt.  Owen started in February 2011 and tested for his green headband.  You can tell the exhaustion from a busy week setting in for Evie in the middle picture.

Evie testing for her yellow belt
Owen sparring for his green headband
New ranks
Evie's last day of preschool came and she sang with her class during the end of the year program.  A great ending to an amazing year of growth and amazement for Evie.  One of the cool things about this class is that Cali, Owen and Evie all got to go through it with the same teacher.  One of the most patient teachers I have ever known that Evie has learned so much from.  She felt comfortable enough with them this year to tell her that one of her nicknames for dad is gorilla!
Evie in Mrs. Floyd's Early Learning Class
To end school and kick-off summer the preschool hosted a end of the year ice-cream social for the whole family...good times...yummy ice cream!
Evie & her friend Riley
Dean & OJ

Cali & Hannah

We started the weekend with a family party to celebrate the big day, complete with a bag of goodies from creative toy mart, a new wardrobe, her very first "bikini" (which is really a tankini but she doesn't realize that...yet), a fun sprinkler and a bear bigger than her!  She didn't mind that Dean got right into her cake!

Happy 4th Evie!
We ended the weekend with a little memorial day celebrating with some great friends (of course the kids outnumber the adults).  The kids take a while to warm up to each other but after a few hours, they're all playing like best friends.  Since the 90 degree heat was too much for the little ones in the jumpy, the dads set the jumpy up inside! 

Happy Birthday week little sweet cheese!

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Wednesday, May 23, 2012

Great Strides 2012: Synergy

On Saturday May 19th, we gathered together for our 2012 walk to celebrate all the success we've had raising both awareness and funds to find a cure for Cystic Fibrosis.  Dean was a bit overwhelmed with the magnitude of attention at times and even chose to take his nap a little early:

Dean napping on Obba

I've been thinking about the best way to express what it felt like for us to be in the middle of this outpouring of support and I'll reuse my post from FB:

There is a fantastic quote that I heard recently that sums it up for every single person that reaches out in their own way to help our little man: 

To the world you may be one person, but to one person you may be the world.
~ Josephine Billings

We are overjoyed and sincerely thankful for each and every call, text, email, kind word, financial donation, in-kind donation, assistance with and at our fundraising efforts, managing fundraising events for us and your help in raising awareness by asking your family and friends to support our quest for this Cure.  We thank our friends, family, their friends and family and our sponsors.

I found that quote above in a book called ONE which is about the idea that one person can make a difference.  There is a great part in the book which reminds us that if you combine two or more good-hearted people in pursuit of a common cause, and suddenly 1 + 1 is more than 2.  The synergy working here is what will make all the difference in the world for us.  You are significant in this fight.  You have a talent, a connection, a kind word and contribute critically to helping us fight for Dean and 30,000 others in the U.S. 

The amount of money raised for Eat. Pray. Dean in 2012 will exceed the goal we set up initially but more importantly we are raising awareness.  Group cohesion talks about the property that is inferred from the number and strength of mutual positive attitudes among members of the group. Beyond appreciation, I'll fill you in on what Jim and I "get" from this team and your help.  We are:
  • lifted up by how Eat.Pray.Dean is growing and increasing in interactions, in comunications, in size
  • ecstatic and humbled by people banding together for this common interest
  • excited for the new friendships we have formed in the midst of such a disease
  • comforted by the fact that old friends and family don't get tired of hearing us talk about how very close we are to finding a cure
  • thankful for the amount of people who took a chance and shared our story with their family and friends and in turn raised more than we could have imagined at this stage of the game
  • ecstatic that we have sponsors willing to connect their company with our cause
  • grateful for the opportunity to share our family with each of you
  • invigorated knowing that we have such a strong team working alongside of us
  • hopeful that a cure will come in his lifetime
  • blessed by a God who trusted us enough to place this fighter in our care. 
So in closing, you play a significant role in this cure.  We thank you and will continue to thank God for you.  Oh, the number?  You're probably interested in where we stand right now!  We set a goal of $28k, after all the outstanding $'s from the past few weeks are entered, we're at $28,062!!!   Besides just the walk, many people helped us in various ways with fundraisers of their own.  To check out these stories: 
http://www.eatpraydean.com/2012-fundraising-stories.html.  If  you're outside of Illinois, we've successully had Kalena take our team out west this year and Marie out East.  We'd love to expand our team in 2013 with your help.

If you missed one of our last posts, check it out here...it shows how even though the drug released last January will not help (by itself), plans are that drug synergy (this word is all over the place :) ) will work together to benefit Dean in the future.  To read the positive results about the clinical trial:  Baby Stepping to a Cure

We have a draft "thank you" created in word and Adobe (thanks Annmarie) that you can use if you would like to write thank you's to the people that supported you via your fundraising page.  This means so much to us and we will send that out to you separately. 

Finally, as you can tell, we cannot stop.  How could you if you knew you were so close to fixing your little boy?  Save the Date for Chillin' & Grillin' for a Cure - Saturday July 14th 3-10pm.  We will need help pulling this one off, and please let us know if you are interested.  Otherwise, please come and relax with the family and have a great time knowing that you are helping make a difference.

Our fundraising page is still open through the year:  http://www.cff.org/Great_Strides/JimandErinBurns

With so much love,
Jim, Erin, Cali, Owen, Evie & Dean

We captured abut 175 but estimated about 200 people supported us on 5/19/2012

Jim, Erin, Cali, Owen, Evie & Dean
We have an amazing amount of pictures and all are so great, we had a hard time picking a few to show so are working on posting for all to see, will let you know when we're done with those.

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Wednesday, May 16, 2012

Saturday May 19th: Great Strides Agenda

Hello!!!  We are so excited that there are only a few days left until our 2012 Great Strides event at Centennial Park in Orland Park!  Here are the details you'll need - we are so looking forward to celebrating with you and seeing you there!  We know how very blessed we are to have been helped by you! 
  • Saturday May 19th at Centennial Park in Orland Park
  • The event takes place on the North end of Centennial Park directly across from the 153rd St. Metra station, where free parking is available (10401 W. 153rd Street).  
  • Our set-up crew will get there about 9am to set up tents and tables. 
  • Please arrive at 10:30 to begin the celebration.  Coffee, snacks and a DJ will kick off the event. Our team is registered so join us by the Eat. Pray. Dean table, sign the guest book, get some info and hand in any last minute donations you have/may have received and enjoy some snacks, friends and fun.
  • 11:00 – 2:30   DJ, Jump Slide, Stilt Walker, Home Depot Craft Activities
  • 11:45 – 12:00 Opening Remarks
  • 12:00 - 1:00   3 mile walk/stroll around the park.  Bring strollers, scooters, wagons for the kids - this isn't a competitive walk, more like a stroll in the park!
  • 1:00 – 2:30pm Lunch, Closing Remarks
Sunscreen or an umbrella (depending on the forecast).  Strollers, scooters, wagons for the kids.  Bag chairs or picnic blankets (there will be people staying back to man the station while we walk so chairs and blankets will be safe to be left near our site).  Feel free to bring extra water to stay hydrated in the event the mid-80s that is forecasted actually happens!
There will be vendor booths that you can explore during the festivities and a brief ceremony before the walk. 
Thank you for everything you have done to help get us to this point.  We're looking forward to celebrating this amazing year of fundraising with you.
If you are unable to join us on Saturday but would still like to donate, please visit our page: 
Email us with any questions! 
With gratitude,
Jim & Erin
p.s. - save the date of July 14th (3-10pm) for our next event...Chillin' & Grillin' for a Cure

Tuesday, May 8, 2012

Baby Stepping to a Cure

Yesterday, preliminary data was released from studies in patients with two Delta f508 changes (mutations) that show promising improvements in lung function. Good things are happening here and we are happy to share that Dean is homozygous for the Delta f508 mutations. The good news is that lung function is improving in the trial participants (which is the goal of CF therapies).  If you read this article, you'll see that they are unclear why sweat chloride levels (a key indicator in the diagnosis of CF) in these studies has not improved with this drug combo but hopeful that the final results of the study will prove more promising and enough to move it forward.

I don't know what to think. I'm boggled by the fact that we're in the here and now, somewhere in middle America, dealing with this disease that is so very close to being fixed.  Dean has years before he can benefit from these results but O M G if it all works out and he does?!?  I will simply be amazed. Faith carries you through so much and when faced with the oasis during your struggle, you want to grab and hold on and pray your heart out that it turns into reality.

So I'm going to pray twice as hard, consider buying stock in Vertex :) and will continue raising money so they can get to the results we need.   As I refuse to sit and let CF define our lives...we're trekking on.  

So, thank you to you all...for helping us fundraise in so many different ways:  helping us pull together all of our fundrasiers, for branching off and raising money for us on your own, for sending out links to your friends and family to help us expand our reach, for sending up the prayers to the big guy and for raising awareness alongside of us.  We hear stories all the time about how Dean came up in conversation and they shared his story, his website, his struggles and we so very much thank you for keeping it going.  Our first Great Strides event in Reno, NV took place last weekend, and thanks to Aunt Kalena for fundraising, taking our team west and raising awareness in San Raphel park!!
Team Eat. Pray. Dean Reno, NV (5.5.12)
Each of you and your work and efforts are helping us turn this mirage into a reality; you are the reason we are able to successfully contribute to this fight. Dean is the reason we do it but our faith, family and friends are the way we do it. Continue to pray for Dean, for those scientists, for the money managers at the CFF, for the people in the clinical trials and for every single person that we are reaching.

It's never to late to help us cast our net...please join our team in fundraising for our cure - we could really use your help in sending out a page to your family and friends. Many many thanks!

Join us on May 19th for our Orland Park Great Strides event

Sign up as part of our team and cast your net

Join us on June 19th for our Ellicott City, MD Great Strides event

Save the Date for our Chillin' & Grillin' for a Cure event (July 14th)

Read the article prompting this blog!

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San Raphel Park, St. Patrick's Grove

San Raphel Park Labryinth