Unfortunately, our fears were met when Faith was officially diagnosed with Cystic Fibrosis at 2 weeks old after the DNA test results came in. Fortunately, the diagnosis was at a very early age. She battled through pneumonia at 3 months of age, a few colds during the winter, & finished a round of antibiotics/extra breathing treatments for congestion in February, she’s doing well in terms of lung function & now much better in weight gain. We just got the news April 21st that she cultured PA. Yikes! We'll now be doing inhaled treatments of TOBI in hopes of erradicating it. She’s a whopping 21lbs at 1 year! She sees a pulmonary specialist, gastrointestinal specialist & a CF team made up of a nurse, respiratory therapist, social worker & nutritionist; each every 3 months & we try to keep a rotating schedule so that she’s checked often.

On a normal day, without being sick, Faith has 7 medications. By looking at her, you’d never know she was any ‘different,’ or I’ll say, more special. Now & until there’s a cure for CF, every time she eats anything, she must take a little capsule filled with enzymes, to help her body absorb & digest milk & food, as she is pancreatic insufficient. She used to have extra special calories added to what she ate. We do chest physiotherapy, vigorously clapping on her back, chest & sides twice daily. She gets a breathing treatment via nebulizer machine twice daily, one is a long term anti-inflammatory & the other thins out the mucus. She takes an acid reflux medicine twice daily for reflux & to aid in absorption. She also takes a droplet of highly concentrated vitamins once daily so that her body gets what it needs to continue to grow. And this is all on the ‘good’ days...if she's sick, most of these are increased to what may seem an extreme. Yes, it is time consuming & difficult at times, but she is most definitely worth it!!!!!!!!

We joke that Faith is “advanced.” She’s been able to roll over to her back from only 5 ½ weeks old & sleeping through the night from 2.5 months! From a tiny infant it was obvious she was already SUCH a lover of life. When I would get her out of bed in the morning, she would be just SO excited & happy that she almost couldn’t contain herself. She loves to smile & wave at any stranger walking by & is the most spirited baby! Now she’s one year old & can sign for milk, eat with a baby fork, put a block in it’s correct size hole, play patty cake with the rolling & throwing in the pan, & if you ask “How old are you?” she’ll reply with her big pointer finger sticking up that she’s one. Or if you ask “How big is Faith?” you’ll get a huge smile & both arms way up in the air to proclaim that she’s ‘soooo big.’

“What can I do to help?” you ask…DONATE: go to our home page & click on the Great Strides. You must know that research can’t be done without funding. We’d love to have you walk with us on May 6, too! Also, be an organ donor by signing up www.donatelife.net. There are SO many CFers on the transplant list waiting for new lungs. PRAY: pray for Faith & others with CF to lead long, happy & healthy lives, pray that someone somewhere finds a cure for this horrible disease. Be thankful for what you have & MOST OF ALL, please don’t read through THIS far & not do something!

I’m VERY open to answering questions, sharing or just talking about CF. I don’t know everything, nobody does yet, but I’m learning. Sure makes me glad I always enjoyed science, biology, anatomy & took so many courses of it in college!!!

 Faith is my whole world. She is more to me than I could have ever imagined. I would give up my life without hesitation if it would give Faith a happy & healthy life.  The good thing about all this is that she will grow up with a whole different view & perspective than you or I did. She will not take all the little things for granted, already she has taught me that. At such a young age, she already has such a spirit & zest for life. I know Faith WILL survive!

As my mother-in-law has told us “I do not know what the future holds, but I trust the one who holds the future. Now He is teaching us all trust such as we have never known before.”

Respectfully, Stephanie 
 (proud mommy to Faith, loving wife to Morgan)

Cystic Fibrosis (CF)

 ·    Cystic fibrosis (CF) is a genetic disease affecting approximately 30,000 children and adults in the United States. A defective gene causes the body to produce an abnormally thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections. These thick secretions also obstruct the pancreas, preventing digestive enzymes from reaching the intestines to help break down and absorb food. The mucus also can block the bile duct in the liver, eventually causing permanent liver damage in approximately six percent of people with CF.