Extraordinary Measures

January 29, 2010 at 4:46 pm Leave a comment

When you stop to think about it and start doing some research you find out there are so many really bad childhood illnesses/diseases out there. It’s actually really scary and so very sad. There is a movie coming out called Extraordinary Measures. It is based on a true story of a father who gave up his job to find a cure for his children’s rare genetic disease. The children have something called Pompe Disease, which means your body cannot break down sugar and without treatment is fatal. And the movie is based on a family with two children with this disease.  On the movies’ website http://www.extraordinarymeasuresthemovie.com there is a button to push called inspirational quilt. It is where organizations and charities could apply to try to win $10,000. I first found out about this because the PKD Foundation has entered to win and the short video they posted was about a little girl named Sage who has ARPKD. Of course since I am slightly masochistic I went on to read other stories and my heart was so saddened.  I often feel sorry for myself and the boys but then again I do know there are so many worse things out there. At this point we are living with ARPKD and actually living a somewhat “normal” life. But to read some of these stories is just unbelievable. Two that really touched me were one about Batten Disease and one about Fanconi Anemai.  Batten Disease is a recessive genetic disease in which there are different forms. One is fatal by the age of two, another one shows up around the age of 5 and is fatal between the ages of 8 and 12, and the other form the children live to be in their twenties. The one I read about can be found at noahshope.com. It is so sad and cannot be looked at without a box of tissues. It is the story of a family who have a son named, Noah, who they thought was fine. When he was 2 they then had twin girls.  When Noah was five he was diagnosed with Batten Disease and a few months later one of the twins was diagnosed as well. It is a rare genetic disease that causes the child to regress neurologically which eventually results in death. It is horrible and there are no treatments or cures out there. Another story that was very touching was hopeforhenry.org. It is an organization formed by the parents of Henry, who passed away from Fanconi Anemia. FA is also a recessive disease that causes the bone marrow to fail. After Henry passed away his parents formed this organization to bring gifts to children in hospitals. It is very touching.

My friend always says if you put your problems into the circle and saw what else was there you would take back your problems. And sure that is probably true. Of course I would love to live a problem free life, isn’t that realistic!!! It sucks to have “sick” kids. It sucks to have any sort of problem. But to look at these stories and see how bad people have it I am grateful for what I do have. And for my “normal” boys who are beautiful and fun even when they drive me crazy!!


Entry filed under: Uncategorized.

Bad doctor’s visit Monday Memories (on Tuesday because yesterday got away from me)

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January 2010
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