Skylar Marie Jones 8/16/11

Over the 21 months of Skylar's life, Ashley stood by Skylar's side and cared for her.  She gave Skylar everything she had but sadly SMA always eventually wins.

Ashley write on her blog today.... 

"For those of you who have been impacted by Skylar, we are having a memorial for her this Saturday for all who want to come. It will be held at our church, Trinity Anglican Mission, at Two O'Clock in the afternoon. We've had lots of people ask already who to make donations to for SMA research instead of sending flowers and we're requesting donations be made to the Hope & Light Foundation. Our church is still accepting donations for our family expenses, but I think we have most of our costs covered now - we'll let you know if that changes."

Sadly this is not the only child who's life was claimed by SMA this week.  We met Joceyln and her family during the SMA conference in Orlando.  Sunday night she passed away.  She was only 4 years old.

I truely hope none of you will ever feel the sorrow and anger we feel daily towards SMA.  Each loss reminds us of what we face and how unfair it is that we can do absolutely nothing to change the course of events for ourselves.  The fate of our family rest in the hands of researchers whom we know are looking for a treatment to reverse the disease early on.  There is little anyone can do for those already a year or two or more down the path.  If SMA has taught me one lesson, it's that the world does not have a rhyme or reason... there isn't inherit justice or fairness. ...and there's a lot more  I can say about this subject but today's not the day.

Today we mourn the loss of children that could have had the most amazing lives along with parents that truely loved and cared for them - and again we learn, life isn't fair.

Rest in Peace beautful angels