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Campaign for a new van (Video)

Visit the Van for Alex Fundraiser on GoFundMe.

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RSV, Spinraza Valentine, and a Ramp to School

*COUGH* *COUGH* Alexander had been coughing from the back seat on our way back from Columbus. “Are you alright?” my wife asked him. “Yeah” he said. The coughs kept sneaking out of his throat with increasing frequency, nagging at us.  He is scheduled for his next Spinraza shot for Valentine’s day, we need to be […]

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First Assisted Steps

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July MDA/SMA Clinic Visit Recap

Pulling into the parking garage at Nationwide Children’s hospital, I noticed a beautiful little girl clutching a bear as she waited near the elevators with her family.  The presence of the stuffed toy and absence of hair made it evident to me that she was sick.  In that moment I was sad, thinking how unfair […]

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Crossing The Threshold

It may not look like much, a rise of an inch or so.  An easy step over from one room to the next by foot.  Seemingly not too difficult to push wheeled objects over either.  Something so simple, so taken for granted, that we’d almost forget that it existed if we didn’t have a toddler […]

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A Special Day

Today is very special. I remember three years ago, the rush and excitement of Alexander being introduced to the world.  He was always such a kicker in mommy’s belly, kicking with more force then his older brothers during their 9 month stay.  He was already determined to let the world know that he was a […]

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Spinraza: A Shot of Hope

One year ago this month we received a call from Alexander’s Neurologist regarding his genetic test results. That call would prove to turn our worst fears into our new reality. The test results had shown a deletion of SMN 1 gene in Alexander’s DNA. This mutation prevents his body from generating effective SMN protein that […]

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Frustration

Frustration doesn’t even come close to describing the level of emotion I have been feeling lately.  The journey to getting Alexander treated has tested our patience, wrecked our emotions, and induced anger towards an overly complicated and cruel process. We were elated to find out the FDA approved Spinraza for the treatment of SMA shortly […]

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Everyday Struggles: Playing in the Bathtub

Alexander likes playing in water and enjoys his time in the bathtub. He can move his little legs and feet a little in the water and he likes that extra freedom. He struggles to keep his head up and needs his bath chair for support to sit. He doesn’t have a lot of strength to […]

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Eating, Swallowing, and Weight Gain

We wanted to provide an update on our most recent appointments at Ruby Memorial hospital. Alexander was scheduled for his first swallow study.  His doctor wants to make sure that he is swallowing effectively and not leaking, or aspirating, into his lungs when he eats.  It also provides us with a baseline to compare any […]

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