See the little babe who’s dipping her toes in the sand?

That’s me, and that was my first summer- a season my family thought I’d never experience. In April of 1991, right before I turned 6 months old, I was diagnosed with SMA type I. At the time of my diagnosis, very little was known about SMA, and doctors told my parents my chances of surviving past the age of 2 were slim. I often look at pictures from my early years and wonder how, with heavy hearts, my parents managed to find such courage and strength. In spite of the most devastating and heartbreaking reality, they still put smiles on their faces and brought their children on trips to the beach.

baby_lyss

See the little babe dipping her toes in the sand?

That’s me, and that was my first summer- a season my family thought I’d never experience. In April of 1991, right before I turned 6 months old, I was diagnosed with SMA type I. At the time of my diagnosis, very little was known about SMA, and doctors told my parents my chances of surviving past the age of 2 were slim. I often look at pictures from my early years and wonder how, with heavy hearts, my parents managed to find such courage and strength. In spite of the most devastating and heartbreaking reality, they still put smiles on their faces and brought their children on trips to the beach.

See the little babe who’s dipping her toes in the sand?

That’s me, and that was my first summer- a season my family thought I’d never experience. In April of 1991, right before I turned 6 months old, I was diagnosed with SMA type I. At the time of my diagnosis, very little was known about SMA, and doctors told my parents my chances of surviving past the age of 2 were slim. I often look at pictures from my early years and wonder how, with heavy hearts, my parents managed to find such courage and strength. In spite of the most devastating and heartbreaking reality, they still put smiles on their faces and brought their children on trips to the beach.

Living with SMA means living with daily obstacles and struggles and a constant fear of what could happen from day to day. But, just like any other difficulties we experience, how we choose to face them is what makes all the difference- it’s what makes life worth living. Life wasn’t handed to me on a silver platter, but as it turned out, I preferred gold anyway. 

Life is what you make it. Do you dare to make it remarkable?

Living with SMA means living with daily obstacles and struggles and a constant fear of what could happen from day to day. But, just like any other difficulties we experience, how we choose to face them is what makes all the difference- it’s what makes life worth living. Life wasn’t handed to me on a silver platter, but as it turned out, I preferred gold anyway. 

Life is what you make it. Do you dare to make it remarkable?

Living with SMA means living with daily obstacles and struggles and a constant fear of what could happen from day to day. But, just like any other difficulties we experience, how we choose to face them is what makes all the difference- it’s what makes life worth living. Life wasn’t handed to me on a silver platter, but as it turned out, I preferred gold anyway. 

Life is what you make it. Do you dare to make it remarkable?

Now, see that girl laughing or probably getting ready to sneeze because she’s allergic to flowers? That’s me today, and that photo was taken at my favorite cafe in town. If you and I were there together, swapping stories and sipping on our cappuccinos, here’s what I’d tell you:

Over the years, I've learned that a remarkable life doesn’t necessarily mean you have to, first, be a remarkable person. It just means that you decided to dare to be something better. Despite your challenges. Or roadblocks. Or even your biggest fears. You dared to be from where you were with what you had. T h a t right there, well, that is pretty remarkable.

Today, I’m 27 years old and living in a small town in the smallest state of the US. I live by, what I refer to as, the three “F” pillars: faith, family, and friends. My faith guides me, my family carries me, and my friends keep me going. Without these pillars in my life, I wouldn’t be where I am today.

On any given day, you’ll find me putting my Bachelor's Degree to good use (Business Administration!) and getting my hands dirty in my nonprofit organization. But, when I’m not busy writing or nonprofiting (yup, made that up), I am most likely spending time with loved ones or binge-watching "Friends" for the 87th time on Netflix.

Okay, fine. Maybe the 88th.

Come learn more about me and my family in my documentary on Vimeo or Amazon Prime!

Now, see that girl laughing or probably getting ready to sneeze because she’s allergic to flowers? That’s me today, and that photo was taken at my favorite cafe in town. If you and I were there together, swapping stories and sipping on our cappuccinos, here’s what I’d tell you:

Over the years, I've learned that a remarkable life doesn’t necessarily mean you have to, first, be a remarkable person. It just means that you decided to dare to be something better. Despite your challenges. Or roadblocks. Or even your biggest fears. You dared to be from where you were with what you had. T h a t right there, well, that is pretty remarkable.

Today, I’m 27 years old and living in a small town in the smallest state of the US. I live by, what I refer to as, the three “F” pillars: faith, family, and friends. My faith guides me, my family carries me, and my friends keep me going. Without these pillars in my life, I wouldn’t be where I am today.

On any given day, you’ll find me putting my Bachelor's Degree to good use (Business Administration!) and getting my hands dirty in my nonprofit organization. But, when I’m not busy writing or nonprofiting (yup, made that up), I am most likely spending time with loved ones or binge-watching "Friends" for the 87th time on Netflix.

Okay, fine. Maybe the 88th.

Come learn more about me and my family in my documentary on Vimeo or Amazon Prime!

Processed with VSCO with a6 preset

Now, see that girl laughing or probably getting ready to sneeze because she’s allergic to flowers? That’s me today, and that photo was taken at my favorite cafe in town. If you and I were there together, swapping stories and sipping on our cappuccinos, here’s what I’d tell you:

Over the years, I've learned that a remarkable life doesn’t necessarily mean you have to, first, be a remarkable person. It just means that you decided to dare to be something better. Despite your challenges. Or roadblocks. Or even your biggest fears. You dared to be from where you were with what you had. T h a t right there is pretty remarkable.

Today, I’m 27 years old and living in a small town in the smallest state of the US. I live by, what I refer to as, the three “F” pillars: faith, family, and friends. My faith guides me, my family carries me, and my friends keep me going. Without these pillars in my life, I wouldn’t be where I am today

On any given day, you’ll find me putting my Bachelor's Degree to good use (Business Administration!) and getting my hands dirty in my nonprofit organization. But, when I’m not busy writing or nonprofiting (yup, made that up), I am most likely spending time with loved ones or binge-watching "Friends" for the 87th time on Netflix.

Okay, fine. Maybe the 88th.

Come learn more about me and my family in my documentary on Vimeo or Amazon Prime

in case you didn't know

  1. My nonprofit organization started with a simple lemonade stand. You can read all about that here.
  2. I was one of the first adults to receive the first drug treatment for SMA.
  3. The way to my heart is through cupcakes and coffee.
  4. I've lost count the amount of times I’ve been to Disney World, but I can tell you it hasn't been enough times.
  5. Speaking of which, at a young age, my father promised me I’d never have more hospital stays than Disney trips. He had no idea what he was in for. 
  6. I'm happiest sitting on a porch, drinking an iced coffee and sharing that moment with a good friend.
  7. The New England Patriots have a piece of my heart.
  8. I started driving my wheelchair at 2 1/2 years old and knocked over our Christmas tree soon after.
  9. Being sassy comes natural to me. I’m kind of proud of that.
  10. I have two dogs- Vince and Wish, my service pup. I also really want to add a bernese mountain dog to the pack. 
  11. To many a surprise, I used to hate writing. Clearly, I didn’t know myself at all.
  12. My passion lies in serving others.

in case you didn't know

  1. My nonprofit organization started with a simple lemonade stand. You can read all about that here.
  2. I was one of the first adults to receive the first drug treatment for SMA.
  3. The way to my heart is through cupcakes and coffee.
  4. I've lost count the amount of times I’ve been to Disney World, but I can tell you it hasn't been enough times.
  5. Speaking of which, at a young age, my father promised me I’d never have more hospital stays than Disney trips. He had no idea what he was in for. 
  6. I'm happiest sitting on a porch, drinking an iced coffee and sharing that moment with a good friend.
  7. The New England Patriots have a piece of my heart.
  8. I started driving my wheelchair at 2 1/2 years old and knocked over our Christmas tree soon after.
  9. Being sassy comes natural to me. I’m kind of proud of that.
  10. I have two dogs- Vince and Wish, my service pup. I also really want to add a bernese mountain dog to the pack. 
  11. To many a surprise, I used to hate writing. Clearly, I didn’t know myself at all.
  12. My passion lies in serving others.

in case you didn't know

  1. My nonprofit organization started with a simple lemonade stand. You can read all about that here.
  2. I was one of the first adults to receive the first drug treatment for SMA.
  3. The way to my heart is through cupcakes and coffee.
  4. I've lost count the amount of times I’ve been to Disney World, but I can tell you it hasn't been enough times.
  5. Speaking of which, at a young age, my father promised me I’d never have more hospital stays than Disney trips. He had no idea what he was in for. 
  6. I'm happiest sitting on a porch, drinking an iced coffee and sharing that moment with a good friend.
  7. The New England Patriots have a piece of my heart.
  8. I started driving my wheelchair at 2 1/2 years old and knocked over our Christmas tree soon after.
  9. Being sassy comes natural to me. I’m kind of proud of that.
  10. I have two dogs- Vince and Wish, my service pup. I also really want to add a bernese mountain dog to the pack. 
  11. To many a surprise, I used to hate writing. Clearly, I didn’t know myself at all.
  12. My passion lies in serving others.

MY FAVORITE POSTS

How you should define your inner strength
Let yourself surrender
5 things I've learned from having a disability
My Spinraza journey

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