I came across this video and just had to share.
We hope you can join us May 21st to walk for Anna, Ben and all the other CFer’s who fight against CF everyday!
Tuesday, March 29, 2011
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Our Greatest Joy
Our first and only child, Ben is 100% pure boy. He loves anything train, truck or car. You can usually find him pushing Thomas on his tracks or running a matchbox car up the sofa. He goes by the name of Ben, Benjamin, Manny, B, Little Man and many more. Ben may have CF but it will never define who he is. It's only a small part of him. He will grow up knowing he can be anything he wants. He is a little boy who is loved by all who meet him.
Our Family
The Author
- MHughes
- I am a wife to Ryan and Mom to Benjamin and couldn't be happier. Benjamin was born March 11, 2009. Ben was prenatally diagnosed with Cystic Fibrosis after blood test revealed Ryan and I were carriers. With absolutely no family history of the disease it was a huge shock to us and our friends and family. Despite having surgery at less then 48-hours-old to repair his small intestines, we have been lucky with his health. I created this blog to help keep friends and family up-to-date on what we are doing. My hope is that Ben will look back on it one day and see how much we love him. Welcome to our life!! It's pretty amazing :) For more info on Cystic Fibrosis please visit: www.cff.org
Thank you!
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I watched this today and had to hold my tears in. What a sweet little girl.
ReplyDeleteWhat a strong little girl and family. My heart goes out to them. Everyone needs to hear their story...and ours. We have to find a cure...for all of our little ones. <3
ReplyDeleteOh goodness. I'm a mess. God Bless Anna and her family. Thanks for sharing...might have to pass this along so others know just how important it is to support the CF community.
ReplyDeleteIsn't that clip just amazing? A fellow CF Foundation employee shared the link and let me tell you, I was in tears. It is such a perfect example for why we all do what we do in the way of fundraising for the Foundation and why we will not stop until there's a cure! The sheer strength that all of you who deal with CF daily is amazing to me. You are my inspiration!
ReplyDeleteI cried a lot!
ReplyDeleteSuch a beautiful girl and strong family, just the reminder everyone needs to fight daily and raise lots of money.
I'm going to link to this post in my next blog if that's okay as I agree, it needs to be shared. The sad and scary truth is CF still takes children away from their loved ones and we need to emphasise the importance of Fudraising.
I know I'm late but thanks for all the info on your last post too, even though we don't have cayston here (branded as azli) at the moment due to trials still going ahead, knowing whether it works will be a huge help to us when it does become available and I can't thank you enough for keeping us updated.
Take care xxxx
i saw this video and i coulnt stop crying! for days! i just kept picturing this little girl and her poor family! we are soo luckey and we need to realize that!
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