Amir’s Story

Our second feature is the one and only Amir Marvelous Jackson. Amir was born with spina bifida and hydrocephalus, and from the words of his family: “he is the true meaning of a fighter!”
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The 7-year-old loves to hang out like any other kid. He plays baseball, bowls, goes fishing, swimming, etc; he also has the coolest Halloween costumes. Amir is a bundle of joy; his family lovingly documents Amir’s excursions on their Instagram account,  The Journey of Amir Jackson.

How has Amir’s diagnosis influenced your family’s daily routine?
​Our daily living routine changed the day Amir came home from the NICU. Amir is the only child, so our routine revolves around him. We always put him first. We've been so accustomed to it- Amir’s daily therapy and doctor's appointments. Nevertheless, we make sure to still work, go to school, and always have our family time. 
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How did your family feel and adapt when you received Amir’s diagnosis?
It was a shock and a surprise to both Dad and me when we found out about Amir's birth defect. Because neither of us had experienced or knew anyone on both sides of our family to have been born with any type of birth defect. Everyone in our family learned and did their research about hydrocephalus and spina bifida.

How has Amir’s condition influenced your family’s perspective on advocacy?
Everyone we know or come in contact with just adores Amir and treats him just like any other happy kid. While we always make sure to acknowledge his diagnosis, we make sure to lead him to a strong, healthy, and happy life.

What is something you want the world to know about Amir?
We want everyone to know who Amir Marvelous Jackson is! He is the most happy, strong, funny kid. Amir always has the biggest smile, and his smile is so contagious. On occasion, Amir will struggle to do something, but he will not give up and keep going with that smile on his face. Amir Marvelous Jackson is going places, and we can't wait to keep fighting and pushing through this thing we call life. Everyone stay tuned.

You heard it from Amir’s family, visit The Journey of Amir Jackson to support their page.

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We always put him first; we've been so accustomed to it