Tuesday, July 28, 2009

SMA Updates

Please remember our Family 5K will be this weekend at 9am! It is at Deussen Park Shelter #9. You can bring yourself, spouse, kids, grandma, neighbor, etc. We just ask that you bring a snack to share, some travel-size toiletries for donation to Ronald McDonald House, or a donation to Through Eli's Eyes.

My parents will be attending the SMA walk in Kentucky next weekend. I am so proud of them! Jason and I will be trying to make them some T-shirts to wear to honor Eli up that way.

Some good news out of the SMA community is a recent research article that talks about a possible treatment! How exciting is that?

Finally, I got up this morning to find that baby Ryan passed away last night. I've been reading Jennifer's blog every day so I knew it would probably be this week that I would be typing out these words, but it doesn't make it any easier. I hate seeing the babies continue to die. I hate feeling so helpless to make it stop. All I can do is continue to do what I'm doing and hope it will make a difference to someone.


Lucy and Ethel said...

Thanks for keeping SMA on people's minds. I truly believe awareness is the key to the end.

God bless,

Anonymous said...

As you typed your last entry, I thought of something I wanted to share with you. Eli, was born to you in August, and left you in Jan. Ryan, was born to us in Jan. and left us today. As you celebrate his 1st Birthday, we grieve of our loss. And as we will be celebrating Ryan's 1st Birthday, you will be grieving the anniversary of your loss. It was ironic to me the way our lives mirrored each other in this way. I am truly sorry for the loss of your son and thank you for all of the kind words you have sent our way. I pray that each day, you continue to find ways to celebrate Eli's life as we will Ryan's. My thoughts will continue to be with you...

Jennifer Hawn