A TinySuperhero’s story from a Super Mom’s perspective:
3.5 years ago our vision of parenthood changed forever. Audriana’s (Super Ella’s big sister) vision of sisterhood changed forever. Ella was born with a genetic disorder called Van Maldergem Sydrome. She is 1 of 19 people in the world with VMS. With this diagnosis comes many others. She has microcephaly, crainiosynostosis, hydrocephalus, Chiari and hip dysplasia. She suffers from GI issues. She does not eat (she’s g-tube fed), walk, or talk at the age of 3.5, but regardless of all of that, she is cute as a button and very happy!
It was very devastating in the beginning, but what was so foreign to us 3 years ago has now become our norm. Doc appointments, surgeries, therapies, hospital stays, not to mention all of the questions that consume our minds about her future… But, we are at peace with our new norm. We longer ask, “why us?” or “why Ella?.” We know why. It’s because we are strong, and we have faith. And lucky for her, she has a loud mouth Italian mom as her voice and anyone who knows me knows I won’t go unheard.
In 2017 during a series of brain surgeries and complications Ella showed us how strong she is. She fought so hard for her life and proved that she isn’t giving up and we’re not either. She almost died but pulled through a massive brain infection like a champ. Recently she underwent double femur surgery. Per the usual, it didn’t go as planned. 9 days after the 1st surgery, the surgeon discovered her leg was broken, so she had a second surgery and came home in a body cast, essentially.
We know Ella has a lifetime of struggles and uphill battles to face, but I know with our family and friends in her corner she will love her life to the best of her abilities!!!
The TinySuperheroes Squad is honored to have such a strong, beautiful superhero on our Squad! To follow Super Ella through her journey, go follow her at https://email@example.com