Ginger is featured on Hip2Save.com!! Check it out!!

http://hip2save.com/2010/07/hip2give-cystic-fibrosis-foundation-2.html

So here is my conclusion for the day. God does not give us problems or hardships. I use to think that EVERYTHING happened for a reason and most of the time it was a learning experience. I really don’t think this is true anymore. After losing two babies and Ginger having Cystic Fibrosis and seeing what other CF families have gone through or are going through, I don’t think God does this to us. I’ve come to think life is all random. Bad things happen to good people. God is not punishing us or testing us. It is how you deal with it that can give you strength in the end or not and THAT is where we have the chance to make God proud. It’s so hard because we are raised watching these movies and reading these books that conclude with the bad guy being punished and the good guy prevailing. We grow up and realize this isn’t how it works every time and it is a rude awaking. To be honest It knocked me on my ass. I remember waiting for the week it took to get the results on Ginger’s CF test… We knew there was a high chance it was positive, BUT there was still that glimmer of hope they were all going to be wrong. I promised God that I would fight for a cure for CF either way and I would be a better person and I would never take life for granted. I begged and pleaded and even read books on how to get God to give you a miracle. I remember the day we got the news. It was 100% positive. She had CF. I gave her the Gene G542X and Derek gave her the DeltaF508. These two genes no one had ever heard of just turned my world upside down. At first I was so hurt. I am a compassionate and empathetic person, I always was for animals and people. I thought, “What is God trying to teach me?!” Aren’t there people out there that are more deserving of this lesson? I’m a good person why would my child have to suffer? I now know God did not do this to me and more importantly God did not do this to Ginger. My innocent child does not have this disease to learn a lesson or to teach anyone else a lesson. It happened. And how we deal with it is what I think God takes into account. I hope I make God proud. I know there are days I do and there are days I feel like giving up and I just need a large glass of red wine and to talk about anything BUT CF. I hope someday Ginger will look back and know that I did my best EVERYDAY for HER. She is my drive. I know there are times when people think we are over protective and get annoyed with us, but the bottom line is this, We LOVE her. Everything we do, every decision we make is for that little girl. I know everyone thinks about what they would do in our situation, but really you don’t know that until you live it. You can NEVER know until the person you love most has to fight to live. The love is out of this world, the joy is unimaginable, and the fear is all encompassing. It is a life that you would not wish on your worst enemy, but at the same time you wouldn’t trade with anyone. Ginger’s smile and love makes my world spin. It is what makes me fight and her fire gives me hope. I have HOPE. Hope that my baby will live a long and happy life. It is a dream that is possible. And until it happens I will continue to praise God for EVERY blessing. I will try to make God proud of how I deal with life. I will fight like hell to save my baby and everyone else that fights to breathe. I will never give up on that miracle I started to pray for when she was so small. It will happen one day… one day soon. And all the good in life I will know comes from God. The bad things that happen are just an opportunity to show others our love for God.

♥ Courage is not the Absence of fear. It is believing that something is more important then that fear. ♥

Flash me Friday this week is your most favorite piece of furniture! Mine is this vanity.

It was my Grandma Virginia’s (Ginger was named after her) Grandma’s.

(That would be Ginger’s great, great, great grandma.)

My grandma would play and sit at this mirror when she was a little girl. I played with it when I was little at her house and now Ginger does in ours! I love it!!

These were my baby shoes and my grandma’s high school year books.

Update on my search for comfort and hope…

I told you I emailed the pharmaceutical co developing the drug Ataluren/PTC124, well they actually wrote me back! Here is their email!!

Dear Sarah and Derek,

Thank you for your interest in ataluren. I’m happy to answer your questions where I can but, as you suggested, I can’t answer some of them. We hope to find answers for your first three questions once we have the results of our current trial. As for the others:

Timing: the current trial is still recruiting. It will run for approximately one year after the last patient enrolled receives the last dose. Then it will take several months to analyze the data and submit it to the FDA for approval, which can take up to six months. So probably the earliest is late 2012 or early 2013.

Dosage: Dosing is by body weight so adults will take more drug than children but it is because they weigh more, not because they are older. In the current trial, the dosage is 10 milligrams of drug per kilogram (2.2 pounds) of body weight in the morning, 10 mg/kg at midday and 20 mg/kg at night. Ataluren is a mild vanilla-flavored powder that is mixed with milk or water.

Age: Right now it is only approved for use in a trial for children six years or older, so if the trial is successful and the drug is approved it will be only for that age group. If the trial is successful we will consider doing trials in younger children. Age six was specified because the trial’s primary endpoint – the measure we are using to determine if the drug shows a significant improvement when compared to placebo – is FEV1 as measured by spirometry, and children under age six cannot perform spirometry with reliability. A different endpoint would have to be chosen if we opened a trial for younger children.

Long term: theoretically the drug should remain effective but we will not have the answer to your question until the drug is approved and there is experience with long-term use.

Safety: ataluren has been studied in a variety of clinical trials in healthy volunteers and in patients.  It was given to 38 patients with nonsense mutation Duchenne muscular dystrophy and 77 patients with nonsense mutation CF who participated in the Phase 2a studies and was generally well tolerated.  Adverse events were infrequent and usually mild to moderate in severity.  A few patients with CF sometimes had mild burning with urination but this did not result in therapy being interrupted or discontinued.  There were no safety concerns based on physical examinations, vital sign measurements, electrocardiograms, or laboratory test results.  A Phase 2b pivotal study of 174 boys and young men with nonsense mutation Duchenne/Becker muscular dystrophy was completed late last year. Safety data from the study showed that ataluren was well tolerated and no participants discontinued treatment due to an adverse event.

If you would like to receive reports about ataluren in CF I invite you to join our email update list by following this link to the “contact us” section of our website and signing up: http://www.ptcbio.com/5.0_contact_us.aspx

I hope this information is helpful. Please feel free to contact us again should you have additional questions.

Best,

Diane

Diane M. Goetz | Director, Patient and Professional Advocacy | PTC Therapeutics

So I wrote her this:

Thank you so much for all the information Diane. It really means the world to me that you would write me back so quickly and with so much information. I just feel like the more I can find out the better I might feel. Our little girl , Ginger Blue is 16 months and my life. CF is such a terrible disease. We are so grateful for the work PCT Therapeutics is doing. This drug could possibly save my daughters life. Thank you ALL for what you’re doing. You’re our heroes.
Much Love, Sarah

and she wrote back!

Oh, Sarah – Ginger Blue is precious! I have shared this with my colleagues and a copy of the photo now decorates my office. Thank you so much for sending it and for your kind words. Seeing how our work might help makes us all want to work even harder.

Best,

Diane

This was good… Although I wish they would tell me, “Oh yeah, this will make her all better, forever.” I guess I’m not going to get that answer. I was really surprised and disappointed to hear she will not even be able to take it until she is 6. This was news to me. On the up side it is neat to know that Ginger’s face is in the building that a medication that could save her is being worked on. Makes me smile……

KeEp PrAyInG fOr A cUrE!!

What can Ginger say?!

Mama, Dada, Papa, yellow, no, ticktock (for clock & watch) she pants when she sees a dog, meow for cat, tree, poo poo, ni ni (good night) coco, cracker, Hi, bye, Hello (when the phone rings) What’s dat? What’s this? Boy, sniffing is flower, cold, water, slide, ouch, wow, oh no, la la (to sing along with a song), Mmmm (when something taste good) Up, Muah (kiss)

Saturday was our 6 year anniversary! It’s so funny how it seems like just yesterday and like a million years ago all at once… I don’t know how I got so blessed to find my soulmate at such a young age but I really did. Derek is more then I could have ever asked for. We are pretty broke (as usual. HA!) We agreed no gifts this year. We decided that we were going to go to dinner and a movie. I won a years worth of movie passes for being the top team at our Great Strides walk this year. Soooo we drove up to the mountains to our favorite mexican food place. When we got there The owner said there was a table ready for us in the back. We walked back there and there is a table set with candles lit and a big bouquet of daisies (my favorite flowers) and these cute place mats. It was the cutest thing on earth! Derek had to go do some stuff that morning and I guess he picked up all that stuff during the week and took it up there that morning and set it up! After dinner they brought out a special desert that Derek had brought up. He put one white candle in it and we made a wish together for the up coming year of marriage. (Can you guess what it was…) We went to the movies which we had the wrong time for and ending up having to see a kids 3d movie called Despicable Me. I’m glad it turned out that way. It was a happy ending movie which is always what I need these days. I can get anxiety from a movie trailer so a stressful movie does me in. Ha! I’m a lot of fun now days. Well in short our 6 year anniversary was my favorite yet. No over priced restaurant could match the romantic dinner Derek made for me. He really is my sweet soulmate.

This week’s flash, your favorite piece of art in your home! This was hard to do because Derek is such an amazing artist. How could I pick one?! I narrowed it down to two by Derek and one by a dear friend that touched my heart with her art. Here they are!!! (sorry about the glare)

The Virgin Mary

Our dog Tobey

My Birthday gift from Robin

I feel like I NEED answers. I need to know if these drugs are going to help Ginger. Are they going to be released. Are they going to work forever. I’m driving myself mad. It all started the beginning of this week when I was suddenly over come by complete and total anxiety. It was the kind of anxiety were you feel like you should maybe start calling everyone you know and make sure they’re ok. It was late and I wasn’t about to start waking people to make it go away. I knew what it really was and she was just in the other room sleeping like an angel. Breathing in and out lightly in the moon light. I went and checked on her twice. Sat on the couch, got up & fed the cat, sat down, got up and cleaned the kitchen, sat down and decided I would FIND hope. I would look under every rock for what I needed. I emailed all my knowledgeable CF moms I posted questions on CF boards and websites. I got no relief that night… The next day at nap time I started again I emailed a Dr in Israel that works with this study I’m obsessed with. I wait and wait. I get a reply! Nothing. He too hopes for the best. It looks promising… I hate the word promising. This is all they all say! I want more. I want to know what it is doing for those on it. I want to know every side effect. I want to know the truth. The drug I’m talking about is Ataluren or PTC124. Today the feeling still would not cease so I emailed the foundation and the pharmaceutical Co that is working on the drug. Now I sit and wait. What am I waiting for? I know they can’t and wont tell me anything I don’t already know. I have read everything I can and that is all they will tell me. I did find a girl that is doing the study and she writes a blog. She is wonderful and told me that she thinks she got the placebo and was taken off the study for now because she was having problems with nausea. http://littletadpole.blogspot.com/2010/04/ptc124-screening.html I know I’m not going to get what I need to get rid of this feeling. I’m going to have to climb out of this rut on my own. No one is going to pull me out. I hate anxiety but I do have to say that at least I have something to put my hope into. Hope is so important in this. Hope is fragile and so easily smothered. I wish people would watch what they said to me. I need the hope I’ve worked so hard to call my own.

In other news Ginger has learned to use a fork and she rocks at it! She is so cute and proud of herself. She repeats everything I say and can pronounce words you would never believe! Today she pointed at a picture of a baby boy in a book and said, “Whats dat boy?” I’m so proud of her. She is everything. My sunshine.