DAILY LIVING & MOBILITY

Cupcake defying the odds: Life with Spina Bifida

Spina Bifida (SB)

Alyssa Marie

A journey with many complications

Alyssa, also known as Cupcake, was born in December of 2012 in Gainesville Florida. We found out during the pregnancy, at 24 weeks, that she had Spina Bifida hydrocephalus, and cleft lip. Immediately after birth Cupcake had her first set of surgeries. We stayed in the NICU for 5.5 months due to several complications. We also found out during our stay that she was deaf (bilaterally) and had heart defects (ASD & VSD). Once she had open heart surgery in April of 2013, she became healthier as the days passed. We have watched Alyssa go through more than her share, and she did so all with a smile on her face and an amazing attitude.

Today

Cupcake is four years old now! She is paralyzed waist down, feeds through her gtube only, and has a few other minor issues. For the most part she is healthy, happy, and so silly (with a little sass too!) she uses a wheelchair/stander, she scoots, and she was also a recipient of a cochlear implant in 2016 which has made her much more vocal. Watching Cupcake defy all odds, on a daily basis, is the most humbling and inspiring journey of all.

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