$550.00

I'm excited to participate in the Stroll for Strong again in 2023 and excited to once again be a part of team Amazing Grace Esposito.. 

This year, I feel it is an appropriate time to update our Why We Stroll. Marisa is now a Senior in high school and (hopefully) will be off to college next year. With Empty Nesting stage approaching quickly, we find it is a time of reflection and gratitude. 

Our first couple of experiences with the hospital were with Makenzie. As with most first time parents, Laura and I always struggled when something happened to Kenz. Once we looked down to see Makenzie smiling and a cracked toy Barbie cell phone. Well we couldn’t find one of the batteries. So to be safe we took her in. After an x-ray and several assurances she would poop it out, and told to ensure we are closely examining her poop – we were on our way back home. She did poop it out and we still have an x-ray hanging in out kitchen w a very clear small circular battery smack in the middle of her chest.

Around 2 years old, Makenzie started showing signs of precocious puberty. This led to a slew of specialist appointments and a litany of tests whose results led to more tests. When we went in for an MRI, Laura was expecting with Marisa so she couldn’t be there as she was put under. I started crying as she was going under and the Dr. was saying be happy – smile…. Well I was there for Kenz. The Dr. was there for both of us.

Marisa was a challenge from the beginning. An emergency C Section and wasn’t breathing. I knew something was wrong, Laura felt my energy and started asking questions. The Dr. called for a NICU team to come down and they expertly and professionally did their work. The whole time one of the nurses was explaining to me what was happening and why. Her presence and demeanor really helped me through the whole ordeal.

I have a dozen more examples of various times we received similar amazing care. Not only has Golisano helped our children grow and thrive,  They were also there for Laura and I.

We as a family appreciate all of the employees that have been involved in Marisa's care throughout the years. We definitely witnessed firsthand how they are all focused on the hospitals mantra of being there #forthekids.

For those of you wanting more information about Marisa's condition - the below information is gathered from the EDS Society.

Marisa has Ehlers Danlos syndrome (EDS) - According to the Ehlers Danlos Society - "The Ehlers Danlos Syndromes are a group of connective tissue disorders that can be inherited and are varied both in how they affect the body and in their genetic causes. They are generally characterized by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that can be stretched further than normal, and tissue fragility. EDS syndromes are currently classified into 13 subtypes."

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