This is Ollie's Tale. This is SMA.

Today we're participating in an SMA Blog Party hosted by the Strongs - Bill, Victoria and beautiful Gwendolyn.  And you're invited, too.  More on that in a bit.  

When we started this blog in November of 2008, our first post went something like this:

Neil sent this e-mail to our family and friends. And so our journey began...

I have very sad news to relate regarding Oliver. Over the last three weeks we have been going through a diagnostic process to determine what was causing physical developmental delays, primarily very low muscle tone and physical strength. Yesterday, the results of a blood test confirmed the symptomatic diagnosis of Spinal Muscular Atrophy (SMA) Type 1. This disease is invariably fatal and most infants have life spans of 18 months or less with 1 year being very common. He will continue to get progressively weaker with respirartory failure likely to be final cause. Mentally, he is unaffected and is a bright and happy little guy. It's hard to stay sad when he's around! To add to the trauma, the disease is autosomal recessive, meaning that both Rebekka and myself must be carriers and that there is a 25% chance any child we have could develop SMA. Clearly this has been a very tough time and will continue to be so. Bekka and I are doing about as well as can be expected given the circumstances and are moving ahead with planning for the upcoming year. She will be dropping down to a very part time schedule so that Oliver can be at home and minimize his risk of a respiratory infection. Stride Rite is allowing her to keep her full insurance coverage as she does this which is a huge benefit as it's both better and cheaper than mine. A few people have known about this from the beginning, but with a confirmation yesterday, we feel it is appropriate to let others know. We thank you for the thoughts and prayers as we move forward. Ollie is a well loved little fella.

Oliver is, indeed, well loved.

It took less than a year before we had to write Oliver's obituary.  We knew the day was coming, but it still took us by surprise.  This was the first post I made after his death:

It is so hard to type these words. Almost as hard as it was to say them.

Oliver's gone.

Two days shy of his first birthday.

While Neil and I had prepared ourselves (as much as is humanly possible), it still hurts so much that words cannot begin to describe it.

Thank you so much for your support and thoughts throughout this journey.

Please continue to pray for us.

SMA is still our passion.  And it always will be.  Which is why we're participating in the SMA Blog Party.  It's why I did a radio interview shortly after Ollie's death.  And why I did an interview on live TV during the MDA Telethon last year.  And why I asked you to help the Gwendolyn Strong Foundation win much needed money for SMA research in the Chase Community Giving campaign.  The SMA Blog Party is also about winning much needed funds.  But, more importantly, it's about raising awareness on a bigger level.

The contest this time around is the Samsung Helmet of Hope.  And we need your help.  Go to VoteForSMA.com and cast a vote today and every day until September 29th.  A winner will be announce at the Kansas Speedway on October 1st.  Jimmie Johnson's helmet will feature the Gwendolyn Strong Foundation's logo at an event October 10th at Auto Club Speedway.

So help us out.  Go vote right now.  For Ollie.