Starlight Children’s Foundation: Meet Emilie and Briana

Meet Emilie and Briana, Best Friends through Starbright World

My name is Emilie, I live in NC and have three younger brothers and a dog named Squirt! I have been sick all my life at 5 days old I ended up in the hospital and was put on a sleep apnea monitor and also had difficulties meeting normal developmental milestones such as rolling over, standing up and learning how to walk.   Eventually I was diagnosed with Ehlers Danlos Syndrome (EDS) which is a genetic connective tissue disorder; as well Gastroparesis, Postural Orthostatic Tachycardia Syndrome (POTS), and osteoarthritis which are all secondary conditions associated with EDS.

I joined Starbright World a little over a year ago and fell in love with it! I’ve made many amazing friends including my best friend Brianna, who even though I had only known for a short time, I felt like I’ve known forever. Having someone to talk to that understands what you’re going through is really helpful and being able to become best friends with them is just amazing! We found so many things that we have in common such as our shared love of music and theme parks and have been there for each other through good times and bad. I’m so thankful that Brianna is in my life and being able to meet her in person would be the opportunity of a lifetime!

It was my dream to be able to meet Brianna in person and The Bachelor made it come true!

My name is Brianna.  I am a member of Starbright world and I have Mitochondrial Disease.  I also have severe sleep apnea and scoliosis.  I have a trach for my sleep apnea and sleep with a ventilator at night.

At age two I was diagnosed with Mitochondrial Disease (which is a disease of the cells).  My symptoms of the disease are primarily weak muscles and low energy, which contributed to the development of my scoliosis (curvature of the spine).  From age 2-8, I had to wear a hard body brace but even with the brace my curve progressed to 120 degrees.  I have had 10 spinal surgeries, with rods and over 30 screws in my spine to correct the curve.

Through Starbright world I have met so many awesome people and they are now among my closest friends, such as Emilie.  I have known her for what seems like forever but really has been only a few months.  It’s so nice to have someone there for you that know what you’re going through. We talk everyday but we had never met in person.   I am so thankful that The Bachelor made it possible to meet her!

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