A Cupcake A Day to Fight SMA – Alexa’s Angel Cupcakes
I want to introduce you to Alexa Felix. She is a beautiful, happy little girl. She loves Dora the Explorer, The Backyardigans, Snow White, music, being read to, baby dolls and balloons. She always has a smile on her face and she lights up when anyone walks into her room. Oh and she loves to SHOP!! However, Little Alexa also suffers from Spinal Muscular Atrophy or SMA.
Alexa was diagnosed at 5 months old. She never achieved the ability to roll over, sit up, or talk. Since then she has lost the ability to hold her head up, swallow and even cough. She is fed through a tube surgically placed into her stomach. She has a machine we use on her to simulate a cough to help clear her airway. She wears a machine at night to help her breathe. She has been hospitalized numerous times, sometimes for 6 weeks at a time. Through all this she knows nothing else but what is her life and she is extremely happy.
SMA is a genetic disease in which loss of nerve cells in the spinal cord called motor neurons affects the part of the nervous system that controls voluntary muscle movement. There are 4 types of SMA, with Type 1 being the most severe. Alexa has type 1.
SMA is the #1 genetic killer of children, with 50% of babies diagnosed dying before their 2nd birthday. We are blessed that Alexa will be 3 in November.
1 in 40 are a carrier of the gene & most don’t know they are until their child is diagnosed.
It is estimated 1 in 6,000 babies are born with SMA worldwide.
The National Institute of Health has named SMA the genetic disease closest to a cure, with a cure possible within the next 5 years. Funding is the biggest roadblock to a cure. SMA is considered an orphan disease because it affects less than 200,000 people, so it is not considered a profitable investment. Most fundraising is done by families.
August is National Spinal Muscular Atrophy (SMA) Awareness month. To show support, Jessica Cuff (winner of Cupcake Wars, the cupcake queen!) will be baking A Cupcake A Day to Fight SMA. Jessica explains how it will work:
“Okay here is the plan… I am going to bake a new and different flavor each day of August (1 dozen). Each cupcake will be called Alexa’s Angel Cupcake and the flavor will be listed below the sign. 100% of the proceeds from sales of Alexa’s Angel Cupcakes will go directly to FSMA.”
Every day throughout the month of August a new dozen will be made. None of the flavors will have been used at The Coffee Shop…they will be all brand new concoctions by Jessica specifically for this event. We will tweet and post the flavor of the day every day throughout the month. These will surely go fast, so be sure to come in quickly and follow us on Twitter for the flavor of the day, and the time they will be available. Even if you aren’t lucky enough to try the Alexa’s Angel Cupcakes, we will have a donation jar available if you want to contribute nonetheless.
We know the great people of our community will step up and help put an end to this disease once and for all. Its really a win-win situation for everyone – you get to try a rare, special cupcake that may never be available again and at the same time you know that you are contributing toward a wonderful cause to help kids like Alexa in their fight against SMA.