Saturday, August 9, 2014



Luke will be getting his cast off next Wed! We can't wait. He's been so good about it all, but we are pretty tired of being stuck at home mostly for the past 6 weeks.

Every year in August the SMA community raises awareness about the disease. I have done this before on my blog, but thought I'd just say a little about it. SMA is caused when both parents are carriers of the gene and both pass it on to their child. Being a carrier doesn't affect the person, you don't get the disease from being a carrier but can pass it to your child. In our case Livi didn't get the gene from both of us so we had no idea we were carriers since there was no family history. So when both parents are carriers 4 things could happen, the child could get the gene from one or the other parent and become a carrier, get the gene from both parents and get SMA, or the gene isn't passed from either parent and the child is not affected or a carrier. So even if just one parent is a carrier then they can pass on that gene to their child and then the child will be a carrier and possibly risk having a child with SMA someday. I know their are tons of what ifs in life and you can't worry about it all. SMA is rare, 8 out of every 100,000 babies are born with it and 1 in 40 people are carriers. But it is the most common genetic disease in children. It's a simple blood test to find out if you are a carrier. The good thing is there is so much research being done and different drugs in clinical trials to help treat it. But right now there is no cure. I don't dwell on that much anymore, but just focus on what Luke can do and how we can make his life full.

August 10th is the annual SMA candlelighting where families and friends of families with SMA light a candle at sunset to remember and pray for those affected by SMA. We will be doing that and appreciate those of you that also would say a prayer for Lukie and all the special kids that deal with this disease.

One more thing we are so excited Luke is starting school at the Little Light House on August 20th! We are raising money for the school and if you are interested in donating to this awesome special needs school here's the link for more information:

https://sna.etapestry.com/fundraiser/TheLittleLighthouse/minilaps2014/individual.do?participationRef=468.0.424648786