“I love having Spina Bifida!”

Q:What’s your name?

A: Hope

Q: How old are you?

A: 15 years old

Q: What type of SB do you have?

A: Myelomeningocele

Q: How can we continue to follow your story?

A: On Instagram @hopie.sunshine

I’ve always been positive and loved being different. I’ve gotten to educate 2 people this month on spina bifida and answer questions from a family member. I’m a Christian. I’m always looking for what God wants with me.

For example, this month I’ve had so much fun telling people, “Yes I’m in a part time (only long distances) wheelchair user but, I’m not broken and Spina bifida isn’t a disease.” I recently had a lady try to prophetically pray for me. (If it’s your thing go ahead, but make sure it’s actually what the person wants before you assume they don’t want whatever they have.) This is the first time it’s ever happened. She said “in the name of Jesus, take this disease “SpinaL bifida” away and take all her pain.” In my head I was literally praying “nope nope nope

I love having my spina bifida. And yes there are hard days but, my best friend also has spina bifida (a bit differently but with a few similarities in the med field.) She just lost her sister earlier this year and was hospitalized twice. She always reminds me to have joy. I’m constantly watching out for her but she is doing better and has a boyfriend that loves her like I do so I can to trust him with my girl. Having another person to tell them your spina bifida struggle and life struggle is the best thing ever. P.S. sorry if none of this makes sense. I have spina bifida brain. 😉


I love Hope’s attitude towards her life with Spina Bifida and how she wouldn’t want to change a thing.  At this young age, she already knows to be herself and love herself unconditionally… What a strong, smart young woman!  Thanks so much for sharing your story Hope, you certainly are a ray of sunshine!

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Kristin Marquis

Hey there! I'm Kristin. I live in the beautiful Seacoast town of Portsmouth, NH with my hubby Matt and our rescue pup Charlie. I was born with Spina Bifida and made this website in hopes that I would reach other people going through the same difficult things as I have and also to inspire others to embrace their differences and live Spina-Beautifully!