This is SMA

Georgie was born bright eyed and strong. She had us all wrapped around her little finger in the first few moments of her life. We loved our Georgie, or 'Joja Wiwee' as Maya used to call her. We took her absolutely everywhere. How could we not when her two older sisters were involved in all kinds of activities?

When she had her first cold at two weeks I was troubled but everyone reminded me that it was fall and she was constantly being exposed to little kids and all kinds of germs. I let it go. I kept letting all of the colds go until I noticed that instead of getting stronger she appeared to actually be getting weaker.

At four months I placed her in the exersaucer and she flopped over like a rag doll, literally. I wanted to throw up but instead made an appointment with the doctor. It would take weeks to get that appointment and a hospitalization before we received the most devastating news parents can ever receive. Spinal Muscular Atrophy. What the heck is that?

Well, it's awful, devastating and breathtaking. It stole Georgia's ability to breath at just six months of age. It left us all reeling and wondering how we would go on. Luckily for us, our friends and family have lifted us up. We have learned to live on faith and of course the support of those family and friends.

Before I lost my baby girl, babies didn't die in 'my world'. My maternal grandmother had 11 children and they are all still alive well into adulthood. My paternal grandmother had six children all of whom lived well into adulthood. Mike's maternal grandmother can trace their family history back 100 years and there are no records of babies or even children dying. I lived in a blissfully ignorant world.

My world was rocked on April 1st 2009 and then shattered on April 21st of that same year. I continue placing the pieces together thanks in large part to a new and expansive family. My SMA family. They are strong. They are passionate. They are hard core. They are courageous. They inspire me each and every day. They need a cure!!

There are many steps needed in finding a cure. One of the first ones is making sure that people know that Spinal Muscular Atrophy not only exists, it is creating angels every day. If you can't remember how to explain it to people you can always say that it's like 'Baby ALS or Lou Gehrig's disease.' That usually gets people's attention.

When Mike and I decided to get pregnant with a fourth child she had a 25% chance of having SMA. In fact, all of our children had that same chance. Because we are both carriers every pregnancy is risky. Somehow we ended up with 3 healthy girls but there are families out there that lose 2 and 3 children to this awful disease. Try to imagine it for even 10 seconds...

We are grateful for all four of our children but miss our 'Joja Wiwee' each and every day. We continue to ask for your help in raising awareness and funds for Spinal Muscular Atrophy not only to honor our daughter but honor and fight for so many other children - because, 'Happiness and moral duty are inseparably connected.' George Washington

Love to you all,

Kristen

It's a Blog Party!

Okay, so I'm one day early but this is the only way that I am going to get it done. We're having a blog party and you're all invited! Today, September 16th, we are asking all of you fellow bloggers, facebookers, tweeters and whatever else you use to communicate with the world to join us. What's it all about? Well it's rather simple. Help us to raise awareness about SMA.

Here are a few facts:

SMA Statistics

• SMA is the #1 genetic killer of young children.
• SMA is estimated to occur in nearly 1 out of every 6,000 births.
• 1 in every 40 people, or nearly 10 million Americans, UNKNOWINGLY carries the gene responsible for SMA. Few have any known family history.
• SMA is a pan-ethnic disease and does not discriminate based on race, ethnicity, or gender.
• There is currently no treatment and no cure, but the National Institutes of Health (NIH) selected SMA as the disease closest to treatment of more than 600 neurological disorders.
• Researchers estimate that a viable treatment and/or cure is attainable in as little as 5 years – IF provided adequate resources.
• The American College of Medical Genetics recommends that SMA carrier testing be made available to ALL couples planning a family, regardless of ethnicity or family history.

What can you do to help? Lots of things. One of the easiest is to simply post some facts about Spinal Muscular Atrophy on your blogs, or on facebook. You can also help the Gwendolyn Strong Foundation win $20000 by clicking here. How about wearing an ivory ribbon and telling people about SMA when they ask what it's for. If you live here in the city please join us on October 3rd for Georgia's Journey of Hope. You can have fun with your family and friends and help raise funds towards finding a cure.

Today as I handed out some of our flyers to families at school one of the mom's had the courage to admit that she still didn't know what SMA is. She knows that we have a little angel named Georgia that passed away but doesn't understand why. I can assure you that she now knows a lot more about SMA. : )

So can you help me out? Do you have a blog? Please consider sharing some information about Spinal Muscular Atrophy. Don't have a blog? How about just posting some information on facebook.

"As long as we have faith in our own cause and an unconquerable will to win, victory will not be denied us."

Winston Churchill

Love to you all,

Kristen

The Garage Sale

Well, it was a cold blustery day. We didn't have any big ticket items or half as much traffic as last year but we still managed to raise $350 for The Children's Hospital here in the city. If Mike's company matches our donation (keep your fingers crossed) we will double that amount. I figure that $700 isn't bad for one morning's worth of work.

Thank you to all that dropped off items, came and bought something or just came by to say 'hi'. A few of you just came by to make a donation. Thank you. Another big thank you to my mom who stayed the whole time. Her cinnamon buns were a big success and were gone shortly after 10:00.

I always find doing a garage sale exhausting but this year wasn't as stressful as I didn't feel pressured to do it. I decided to do it last minute and am glad that I did. It's very liberating to watch all of that stuff go to people who will use it while making room for anything new that we may need. The fact that the money all went to the hospital makes it all the more rewarding. I'm probably going to have to do it again next year as some people came by because they remembered that we were 'the proceeds house'.

The rest of the day was spent relaxing with friends. We were thrilled to meet and spend time with another SMA family. Their baby girl (SMA free) and Aria were fast friends. We took lots of pictures. : ) We are looking forward to spending more time with them in the future. They are the first SMA family that we have had the privilege of spending time with. Thanks for coming Lisa!

In the evening, the girls rode their bikes around on the street with their little buddies all lovingly referred to as 'The Bike Gang'. Maya asked Mike to take off her training wheels last week and he has been spending lots of time running around with her. Well, just to top off a great day our Maya took off! And, when I say took off I mean that she was riding all by herself, turning the corner and stopping on her own! I was choked up watching my anxious little girl, only four years old, riding around, so independent with a huge grin on her face.

Cross your fingers that starting preschool this week goes just as well!

Love to you all,

Kristen