Meet Robin

My best friend Allie and I met Taylor Hanson in August of 2014 after their CNE concert. During our talk, his discovery of my shared new life anniversary and Hanson Day, May 6th, he invited us to Hanson Day Weekend in his hometown of Tulsa Okl.

My best friend Allie and I met Hanson before their concert in Ottawa Dec/07. A great experience for me because I was able to tell them how much their music has helped me through so many difficult times.

Charity 802775791RR0001

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. I'm very lucky to have a great support system in my life. Health professionals get a kick out of me and my sense of humour (I'm a graduate in comedy from Sick Kids Hospital lol) you either let illness win or you learn to find laughter in it. I've been asked recently if I'd like to "teach", I thought at first, funny question, I don't want to go back to school, the doctor laughed, "no, I meant, participate in a teaching clinic where doctors like myself can learn from you, study you by examining and asking question in a clinic." He said, his face lighting up, "I've never seen anyone like you that has so many of the conditions we need to learn about." Great! I think. ;)It might be fun to help more doctors of the future learn about our conditions especially if it helps more of us but could I get paid this time lol. Teaching hospitals are not new to me, they've been a big part of my whole hospital life. I also believe in trying to help others online who need someone to help and understand these illnesses and how to live with them. We never had support groups when I was diagnosed, it was scary and made us feel very alone, now no one needs to be alone especially with support groups like these. Right now I'm working with a Naturopath and an Osteopath in the coming month. I've had success with Massage Therapy and Acupuncture so I'm continuing my route with more natural treatments and see what happens down the road from here because my main goal is to always try and have better health and a continued happier life.​

syringomyelia, Chiari  Malformation & Rare Diseases

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