Awesome news brings me back

I'm back!!! Ok so I needed to take a lil break from blogging I figured Jan would be perfect since there's not to much gong on...

However, there has been so many great things happening. I posted about Dottie she's pretty much AMAZING!!

Then today I woke up to some very exciting news in the CF community. Kalydeco formerly known as Vertex 770 was approved by the FDA 3 months early. You can read more about Kalydeco HERE. I am so excited for all my friends with the mutation G551D about 4% of the CF population have this unique mutation. This pill called "Bluelightening" by my good friend Emily,  is taken twice daly and basically will address the underlying cause of CF for this mutation. So exciting!!!

The mutation I have is Double Delta F508 which is the most common mutation about 90% of the CF population have this. There is currently still research being done to find something for Delta F508 including a second phase trail combining Kalydeco with vertex 809. Kalydeco is opening up doors, its great progress.

So YAY!!! Go out and celebrate!!!! Spread awareness and fundraise we are SO close!

Dottie Lessard

This month's Hero of Hope Living with CF, Dottie Lessard, 44, is an inspiring woman whose CF journey has been truly inspirational. Dottie inspires young kids and teenagers with CF to stay fit and empowers them to take control of their health through her foundation "Dottie's Dream." Dottie is also a life coach, speaker and creator of Empower Pro Nutrition as well as an author. Weight lifting is what inspired Dottie to share her passion of exercise with everyone and hopes to continue motivating people with CF to remain active and positive and to never let CF get in their way of fulfilling their dreams.

"When I'm having a bad day I think to myself, why it is still tougher for me? I see people who are doing the same thing as me and it's hard to deal with. I try to be the best person out there and try my best to inspire someone else. I decide my own statistics and I figured out my own way to live my life to the fullest. Knowledge is the most important key and with that power you have the ability to look forward to the future. You have to think to yourself, how can we do this? Don't ever stop pushing and thriving for what you believe in. You have to find a way to stay strong. Live your life, embrace your challenges and gain strength by them. Don't let CF or your transplant define you."

Dottie is SO AMAZING!!!! I have had the pleasure of meeting her in real life, she is so inspiring... a true Hero. To read more about Dottie Click Here

To nominate your Hero Click Here

Hustle and Bustle

The Holidays are approaching! I can't believe they are right around the corner. I feel bad that I haven't blogged in quite some time... Tis the season to be busy. Its like the North Pole here at my house. I got some fancy idea that all 2011 gifts should and will be handmade. I started in Oct and things are finally getting finished up, I just can't wait to be able to see my counters again.

The air has been so bad here, I am so excited that it is suppose to snow tonight this elephant that has decided to sit on my chest needs to take a hike and with that first snowflake I am sure it will head on out, for a couple days any way. Never thought I would be so excited for snow, I really am dreaming of  a white Christmas. ( ha ha couldn't resist) The bad air is tough but Nothing Henry can't help with tho ;) Ricki and I finally named my O2 Henry over Thanksgiving and of course you have to say it with a English accent ;)

I hope everyone enjoys the Holidays and your time spent with family and friends.

We hope your Holidays are MERRY and BRIGHT!!! 

Xo

Somer, Osc & Lills

Be An Angel....

A Sharlie's Angel!

Many of you may remember my post about Sharlie recieving the great news that she was accepted at Stanford to get a new heart and a new set of lungs. Well if you don't remember you can click here.

Well many of Sharlie's Angels have rallied and helped fundraise for her next BIG miracle. You can check out her fundraising page here. There have been lemonade stands, craft sites, a benefit called Air supply you can read all about those on Sharlie's blog which is titled Sharlie's Angels. I know she feels that everyone in her life is truly an angel but in reality she is our angel. We are all SO blessed and SO lucky to know her and I know she inspires many each day including myself.

I wanted to help out to in some way, so after brainstorming some ideas I came up with an idea to paint a Sharlie's Angels painting. I thought I would auction it off on my blog and all proceeds would go towards Shar's transplant. So below is a close up of the painting and a description...

This painting is titled Sharlie's Angels and it is painted with acrylic paints and on a 16x20 canvas. Here's a close up pic of it....

So the highest bidder will receive this 16x20 painting. You have until Dec 1st to bid, that way I can get it in the mail in case you want to give it as a Christmas gift. Just leave a comment or email mail me at somer@lovetobreathe.com with your bid. I will update this blog post to let you know what the bid is at every day unless the bid remains the same.

I will start the bidding at $100. Good Luck and Happy Bidding! Xo

Bid is now at $500 back to Jason. 2 min left!!!  Bidding will close tomorrow at 5pm Mountain time.


Closed~~~~~ Congrats Jason!!! Thank you for helping Sharlie with her transplant. Consider yourself one of Sharlie's new Angels :)

YUCK!!!!!

And people wonder why I am a germ a phobe....

http://www.abc4.com/content/news/state/story/cell-phone-germs-bacteria-nasty/C3h21KRe5kOEDuNDbbF37A.cspx

A local newscast did a study on cell phones, they tested two and they both grew out pseudomonas. I wipe mine off every night with the lysol wipes. I also just took my cover off for good! Hopefully I won't be clumsy and drop it.

So make sure you clean your cell phones everyone!!!!

Video Short #3

Treatment Regimens: How CF Treatments Work and Fit into Your Routine

Now online! 

Knowing how your CF treatments work and finding a routine is important in your CF management.  Watch http://bit.ly/oVuaFR to check out a Video Short where CF patients, experts and caregivers discuss how time management is crucial and how they stay motivated to make their health a priority. 

The video features Ronnie Sharpe, CF patient and author of RunSickBoyRun.com, and wife Amanda, who are founders of CysticLife.org; Isabel Stenzel Byrnes, CF patient, social worker and co-author of The Power of Two: A Twin Triumph of Cystic Fibrosis; Emily Schaller, CF patient and Founder/President of The Rock CF Foundation; LaCrecia Britton, CF Coordinator, RN and CPNP. 

The stories in this third installment of the CF Community Video Short series may help you to better understand how your CF treatments work and how you can fit treatment into your daily schedule.

Forever my Lil Star!

Again I write with a broken heart... I received some very shocking news last Sat the 22nd. My Lil Cys Astra received her wings. She didn't lose her battle to CF she simply crossed that CF finish line. To me fighting every day and overcoming challenges doesn't qualify you as losing any battle. So I prefer saying she crossed that CF finish line. You think it would get easier for me but it actually just gets harder and harder losing my friends to CF. However, the bond we share is greater than any thing I can describe, I wouldn't change it for the world. I believe it's better to love and lost than not love at all, my Cysters mean the world to me. These hard times give me more drive and fight to kick CFs A**!! Actually CF doesn't stand a chance, you don't mess with my friends!!!

I have no words really, it's so hard to wrap my head around this. I just saw her on the 10th and she looked great and was doing awesome. She had just posted pictures from a Halloween party to face book last week, she was the cutest mad hatter EVER!! She looked great and was loving life. In fact Fri the 21st she was out with her friends til 2:30 am again enjoying life, because that is what she did always. To lose someone so unexpectedly is so shocking and so unreal. Click her to read her obituary

I have known Astra since she was 4, she was my Lil Cys. We hung out and I'd babysit her in the good ol days when we could hang out. Then the dreaded cross infection came into play and we saw each other less but our bond grew even closer through hospital stays and different procedures, good times and bad. I'd go to her drill performances and cheer her on as she danced her lil heart out. Her parents helped me celebrate my 30th bday, we were lifelong friends Cysters!

I know she is breathing easy now and for that I am grateful! She leaves behind quite the Legacy. The last couple days there has been so much love and support from everyone. She touched so many lives in her short 20 years than most people can in a lifetime. She was a gift to all who knew her, I am so lucky to have been her Big Cys.

Knowing Astra and Tiff are up there together makes me smile. I can only imagine the trouble they are getting into. I am honored that Astra is also wearing her Live,Love, Breathe necklace for all eternity, that too made me smile from ear to ear!

I love you Astra SO much, you  forever will be my Lil star! Breathe easy sweet Lil Cys. Know that you lived and loved beyond your years and now you can Breathe! I know you are dancing up there through the clouds!
Xo Infinity!!
Your Big Cys

Below is a pic that my friend and a CF mom Kristal Kennedy did for Astra