NEW YORK CITY
Clinical Trial? Sign me up.
Following my four doses of Spinraza, I enrolled in a clinical trial for the drug Risdiplam, a promising new treatment that was taken by mouth and meant no more fundraising for treatment and no more spinal taps.
New York was a whirlwind of rerouting, rescheduling and functioning in a state of exhaustion and pain from all the travelling. I’ll be honest, when we made it to New York and into the hotel room I cried. I didn’t know if I could handle the constant travelling and stress that had built up around getting to New York and passing my final screening. Thankfully my fears were gone the second we met the incredible team at Columbia University Hospital! They were friendly, gentle and took their time explaining everything and making me feel at ease. The head Neurologist turned out to be the most beautiful human who revealed how hard she fought to convince the drug company to allow an international patient. The whole team knew my name the minute I got there and showed me they were going to do everything they could to make it work.
The tests were truly exhausting and meant I didn’t get to do much during my first time in New York except sleep and hang out at the hospital (which is awesome by the way). On our last night, we made it to Times Square and that was what I needed to get me excited about the many trips full of exploring to come.
CONFIRMED!!! Receiving the message that I was officially confirmed and enrolled in the Jewelfish trial through Roche Pharmaceuticals in NYC was surreal. My mama had fought to get me into this trial with weekly (sometimes daily) phone calls to Columbia University Hospital for over nine months to make this day possible for me. When they believed the criteria would be one dose of Spinraza to qualify, my community and family stepped up and made that possible. When I then found out I needed four doses of Spinraza to qualify, the hospital in Calgary began to fight to administer it. Six months later and over $200,000 raised by such generous people, I had all the qualifications for the trial and just had to wait three months to do the final screening. Ten months since this journey began and now I’m here. Four doses of Spinraza strong, entering a three-year clinical trial for a treatment that can be taken orally and daily that is 100% covered and incredibly promising. I can’t thank every person who followed my journey and supported me in a variety of ways for making this all happen for my family and me. Two years in with Risdiplam and hopefully the rest of my life to go!
