Caroline Rose Brownell was born in the morning of April 27, 2011. She had jet black curly hair and big almond dark blue eyes. She was a wonderful baby even though she was up all night. About two weeks into her life, she started vomiting bile. She would choke shortly after starting to eat. After various studies, she was diagnosed with Nasopharyngeal Reflux, Dysphagia, GERD, and Failure to Thrive. She was also diagnosed in the first year with a Stills heart murmur and Strabismus. When she was about 18 months old, she started screaming all night long. She wasn't able to speak so we didn't know what was going on. Read more about Caroline <click here>

Personal Stories

There are so many patients dealing with Rare Diseases or Disorders, we wish we could share all stories but we could only share some. We want to have those affected share their stories in their own words. So we created the platform to share their own stories to you for a better understanding. The Personal Stories are not edited and are as per how we received them from patients. if you would like to share your story please email to smcm@carionfenn.org. 

Robin Nicholl

  • Network Member since 2018
  • Diagnosed with Syringomyelia & Chiari Malforamtion at age 5. Had surgery for both conditions after exploratory surgery at age 5

​​I've been sick most of my life but that hasn't stopped me from enjoying everything I love. I love going to rock concerts with my friends and staying at posh hotels for memorable holidays, reading, cooking and spending time with my loved ones. I have a lot of health problems that can get me down but I always try to work at being happy and as healthy as I can be thankfully ingrained in me from very supportive Grandparents and Mom and Dad. Read more about Robin <click here>

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Ashley Henery

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The First Carion Fenn Award for Bravery & Courage Recipient. 


Valerie Waltier is the recipient of the First Carion Fenn Award for Bravery and Courage in 2016 presented by Mayor Dave Ryan, City of Pickering at the First Annual Rare Disease Expo. Learn more about Val <click here>

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Caroline Rose Brownell

Hello, my name is Ashley Henery and I am 16 years old and an active volunteer around Ajax and other communities, today I am going to tell my story about how my outlook on life changed almost 3 months ago. It all started on February 23rd, the agonizing, annoying lower abdominal pain I was experiencing. Despite experiencing this pain, I attended co-op because I figured it was just “regular cramps”. 

At co-op, it became difficult to stand and complete my tasks, it got so bad I started throwing up. But, I didn’t mention anything to my supervisor because I wanted to complete that day of co-op. When I left my placement, I immediately called my mom and updated her on how I was feeling, to which she responded, “go sign in for co-op and go to the hospital if you need to”. So, I went back to school thinking I was about to go about the rest of my day regularly. But, during the lunch period, I found myself laying down on the dirty floors of Ajax High without a care in the world for anything but relief. <click here>