Monday, February 23, 2009

Gwendolyn Strong.com

This last week I had the opportunity to meet the most amazing family. The Strong's first contacted me to see if I would be able to help them with a customized blog layout. In the e-mail I received, the mother briefly explained that her daughter has Spinal Muscular Atrophy. Up until this point I had never even heard of the disease. I visited their blog and read the following about SMA:
"SMA is the leading genetic killer of infants. It is a terminal, genetic disease that results in the loss of nerves in the spinal cord and the weakness of the muscles connected with those nerves. SMA impacts the ability to walk, stand, sit, eat, breathe and even swallow. The mind and spirit are no different from that of a healthy baby, but the body eventually fails. Typical babies with SMA Type 1 have a life expectancy of between one and two years and they require around-the-clock medical assistance and monitoring."

My heart immediately went out to this family. I read and cried, and read and cried. I then discovered that Gwendolyn is only 2 days younger than my little guy. I felt such a connection and compassion for this sweet family. I couldn't help but think about how pathetic it was that I was upset about my little guy having a bad cold. This little girl has had to experience much worse, and yet her parents have the most amazing faith in her. The strength these parents have is incredible.

Instead of giving up, they have started this blog to document Gwendolyn's journey here on earth. They have also started a petition to fight for a cure. Currently, there is no cure for SMA. This means that parents with children who are diagnosed with SMA are just told to go home and love their child, there is nothing they can do. Can you imagine? I think it is so wonderful that the Strong's are doing something about it. Their name isn't "Strong" for nothing!

I hope that all of you will head over to their site and read more about their precious little girl! I also hope you will take 30 seconds to sign the petition to help this family (and the many more families that are in this same situation). picture-2

3 comments:

  1. Heading over to their website now!! Cute blog layouts!

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  2. Hil,

    That is so sweet of you!!! I am on my way over to sign... I love the blog design!!

    ♥A

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  3. My five month old great niece was just diagnosed with SMA on April 30th,2009.
    I had never heard of this disease until now.
    I have never felt so helpless, frustrated or angry about something in my life.
    My sister-in-law told me about this website, so I had to check it out for myself.
    Your family is in my thought's and prayer's.

    ReplyDelete

 
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