One is just leaving elementary school; the other is just entering. One is a big sister; the other is a little sister. One fights to help find treatments or a cure for SMA; the other fights to survive the effects of SMA.  Yet they really don't know one another.  Until just recently. Two years ago a young girl entered my 4th grade classroom.  She was (and is) full of life, energy, and goodwill.  She has a strong personality...knowing what she wants, going forward with her plans, and lets nothing stand in her way.  She's determined, she's straight-forward, she's big-hearted. In many ways since I've known her she has supported Ella's fight against SMA.  She has had lemonade stands, made cards for Ella, and asked about her...genuinely wanting to know how she is faring.  Her name is Hannah. I received an email from her mother asking if it would be all right if Hannah did something for Ella.  Hannah's plan was to have her 11th birthday p...

One of the criteria for the diagnosis of SMA Type 2 is that the patient has reached the milestone of sitting unassisted.  Ella fits that criteria well.  In fact, almost her entire day is spent sitting, either independently or strapped in a wheelchair. One of the consequences of SMA is, of course, the atrophy and weakening of muscles.  When you combine muscle atrophy with non-weight bearing a host of problems can and do occur.  One of those problems has to do with the hips. The weak muscles cannot hold the hips in the proper place and over time they begin to dislocate. We've been keeping an eye on them alongside Ella's orthopedic surgeon for the past year now.   Historically speaking kids with SMA Type 2 wouldn't have had hip surgery for the simple reason that if there was no pain associated with the dislocation the call for surgery was unwarranted.  Doctors simply "kept an eye on them".   So what's changed?  Survival. Kids with Typ...

In the middle of May, we were so fortunate to have Ella's Make-A-Wish trip...a Disney Cruise (aboard the Disney Dream) to the Bahamas! It was a magical trip, to say the least, and we all had an incredible time!!!  Make-A-Wish took care of everything, literally everything , from transportation to the airport, to money for souvenirs.  We were treated like royalty the entire time we were there!  The cruise ship was like a palace on water, and luckily none of us had any issues of sea sickness :)  The food was amazing, as was the service.  We enjoyed time in the pools, on the beach, and we even got to swim with a dolphin! We are so grateful for the Make-A-Wish organization for providing us with the trip of a lifetime!!! But enough talk...pictures are worth a thousand words :) At the airport Ready to go! Henry at the controls The bus to take us to the port Inside the Disney Dream! Our stateroom Our stateroom Our pr...