Yesterday I flew down to LA for dinner…No this is not a normal occurrence for me..ha ha..But I had the privilege of attending “A Night of Hope” in honor of Baby Hannah’s life. The Gala’s focus centered around raising awareness for Spinal Muscular Atrophy, a disease I was introduced to just last year, at age 21, even though it is the #1 genetic killer of children under the age of 2. Seriously? I became aware of this horrific disease after one of my favorite little baby subjects, Miss Getty Storm, was diagnosed at 4 months. Though Getty lives with this disease day in and day out, she has changed lives. She is the reason, one of the very precious reasons, that I am on board to fight. There is so much hope that we will find the cure for SMA, and last night I knew in my heart that this was what I am supposed to be doing. So Getty, count me in. We will be fighting till the ugly SMA is gone, and cured.
At the Gala I met Alex and Angela from “The Damnwells”, an AMAZING band, who dedicated their latest album to our precious girl – Sweet Water Child: Lullabies for Getty – I cannot wait to buy my copy. 100% of the proceeds benefit Getty’s family and SMA research.
I cannot emphasize how important the research is right now, we are potentially on the brink of a cure. That makes me want to fight that much harder. Below I am proudly standing next to Vincent Gaynor, co-founder of Sophia’s Cure. His wife, Catherine, and him are fighting with everything they have. Their daughter Sophia, who is 21 months is fighting the disease just like Getty. I cannot wait to end this disease. Watch out SMA!