SMA - Precalc Essay 9/22/04

SMA, Spinal Muscular Atrophy

One of my passions in life is helping others. I am particularly passionate about Spinal Muscular Atrophy and the families that deal with it on a daily basis. In case you don’t know, that is why I use a wheelchair to walk. I have Spinal Muscular Atrophy, SMA, type I. This is the most severe type of SMA. I am considered a “Super I” by my doctor because I don’t fit into the “normal” type I category or the “normal” type II category.

For the past three years, I have been making cards for kids with SMA and their siblings. I do not go out and buy the cards, but make them with Brenda and my cousins in the summer. I started out by sending 10 cards a month and I’m now up to about 100 families. I try to send a card once a month to each family but some months are harder to do than others. Last year, I missed two months, but in the summer time, each family got 4 cards instead of 2, so I guess it evened out.

This year I started an organization for newly diagnosed children with SMA. I started it in April of 2004. I started my organization because Brenda, my caregiver, had made me too many quilts. Brenda learned to quilt a few years ago and by April she had made me more quilts than I needed.

So that she could continue to enjoy quilting we had decided that we were going to help a friend who had an organization that gave blankets and toys to children with SMA. Brenda told her mom about this organization and her mom decided to help too. When Brenda came home from Easter vacation she had several quilts that she and her mom had made. When we contacted our friend she informed us that she was no longer going to be doing her organization. We were unsure what we were going to do with so many blankets, so I decided that we should start our own organization, B4SMA (Brenda came up with the name). B4SMA stands for Blankets for Spinal Muscular Atrophy kids. To this date, I have sent out about 30 different blankets to kids across the Unites States.

As you can tell, I love my SMA family. Each kids that is diagnosed, their siblings, and parents have all become a part of my "extended" family. I love each of them for different reasons and when they hurt, I hurt too. I will always cherish the friendships I have made and will continue to help them and new families in any way possible until I am no longer needed.