Raising Awareness

I tried to do this on Facebook but it didn't work. It will now get there by default.

Please help me to raise awareness by posting or emailing the following information.

Spinal muscular atrophy (SMA), the number one genetic killer of children under the age of two, is an often fatal disease that destroys the nerves controlling voluntary muscle movement, which affects crawling, walking, head and neck control, and even swallowing.

SMA is one of the most prevalent genetic disorders. One in every 6,000 babies is born with SMA. SMA can strike anyone of any age, race or gender.One in every 40 people carries the gene that causes SMA. The child of two carriers has a one in four chance of developing SMA. 7.5 million Americans are carriers.

SMA Patients are classified into four types based on milestones achieved at onset of SMA. Type I and II are the most prevalent. Type I, or Werdnig-Hoffmann Disease, is the most severe form of SMA. Type I SMA strikes infants between birth and six months old. Children affected with Type I cannot sit without support. --THIS IS THE TYPE that Georgia had.

With each pregnancy Mike and I have there is a 25% chance that our baby will be affected. Calla, Maya and Aria are all healthy (Thank God) but they too may be carriers. We have lost one child and while we will probably never have any more children we continue to work towards a cure in honor of Georgia and all of the other warriors and angels out there.

August is SMA awareness month. Please consider wearing an ivory ribbon. The color is representative of the innocence and purity of SMA's victims.

Cure SMA

Six Years Old

Well, the blog has been sort of ignored the last few weeks. Calla just finished two weeks of daily swimming lessons that seemed to somehow eat up any time I had. It was worth it in the end however as she started out being scared to put her face in the water and ended up swimming like a fish! She now likes to try and sit on the bottom. : ) She has been showing off her skills at the local wading pool and the beach.

I have been thinking that six years old must be pretty tough. There are so many new skills to be learned and experiences to live. Since Calla turned six she has really started to read. She has also started to ride her bike and now she is actually swimming. Can you imagine if we all tried to seriously learn 3 new skills in half a year. Think about how accomplished we'd all be?!

Did I mention that she also started skating over the winter and is now doing basic math. She has also learned how to do a pretty good cartwheel! In another month she'll be off everyday from 8:30 until 3:30 at school (I am hoping to have her home for lunch). I find it amazing to watch how much Calla is learning every day.

On another note August is SMA awareness month. I tell people regularly all about Georgia and what SMA is. As we approach Georgia's birthday I am going to throw out a challenge to all of my Winnipeg friends and family but right now I am asking anybody who reads this to make a commitment to telling two people about SMA - two people that don't already know.

You could also wear an ivory ribbon. Why ivory? The color represents innocence and purity. If you wear one people will automatically ask what it stands for. I figure that if we all went at the task of raising awareness about SMA the way a six year old approaches life, before we knew it there would be no one left to tell.

Love to you all,

Kristen