The SMA walk is this Saturday. I hope everybody will be here to help support this event, raise some money to help find a cure, support Kyle, and represent UPB to the community. As a reminder of how important this event is, I want to re-share the letter Kyle wrote when we started this event last year.
Dear United Parish of Bowie Members,
My name is Kyle Bickel, I’m eleven years old, and I have been a member of the United Parish of Bowie church since I was a baby. I’m not sure if you know this, but in 2014 I was diagnosed with Spinal Muscular Atrophy or SMA for short. SMA is a genetic neuromuscular disorder. It is considered the most common rare disease. There are four types of SMA. People with type 1 typically die when they are infants. People with type 4 discover SMA when they are adults. I am very fortunate that I have type three SMA. This allows me to be more active and I have an easier time doing regular tasks.
You might be wondering how this impacts my life. This impacts my life by making it harder for me to move around, run, walk, and play outside. My doctor said my leg muscles look like Swiss cheese and a regular day for me is like you carrying a 50-pound book bag everywhere you go. I sometimes feel left out because I can’t play with my friends. Since I’ve been diagnosed my family has done fundraisers to help cure SMA and it makes me happy to know people really care about me and others with SMA.
Recently Pastor Chris and Ms. Kennedy asked me if I would be ok with the church doing a walk for SMA and I said yes. So Pastor Chris and Ms. Kennedy have been trying to get approval to do the walk. I am very excited for this walk and I am thankful the church is considering it. I can’t wait to see how much money the United Parish of Bowie will raise!