When I'm Gone

Hi, my name is Peter Kelly and I was diagnosed with Cystinosis when I was just 4 years old.

Cystinosis is a disease where amino acids build up in the cells but can’t find their way out. Normal cells would have proteins (amino acids) go in and out on a regular basis. With this disease, the cells will simply die when the build up is too great. This affects all the organs and tissues of the body.

Children who have this disease are small in stature and often fail to thrive. I was extremely light-sensitive as a youngster and had to wear sunglasses all the time, was very pale, and tired, among many other things. Only about 2000 people worldwide, and a hundred Canadians, are affected with Cystinosis. Consequently, research funding is somewhat limited.

Cystinosis affects all organs. The kidneys are usually the first to suffer and die.

At the young age of 7, after lots and lots of dialysis, I was lucky enough to receive a kidney transplant at Sainte-Justine’s Hospital in Montréal.

In the year following the transplant, my body tried to reject my new kidney seven times. What this meant is being hooked up to an IV machine for days on end receiving large doses of prednisone. It wasn’t exactly a great year for me: Prednisone had many undesirable side effects and I missed school a lot.

Another effect of Cystinosis is severe calcium deficiency, which led to rickets in my legs. Mine grew crooked and quickly became painful. I required an entire other year of surgery and medical interventions which, again, kept me out of school.

Not long after, while on a sidewalk in Shawinigan, I was hit at full speed by a 95 year-old driver, who had not even realized he had hit me. This resulted in no less than 14 fractures in my right leg and my kidney transplant no longer working. It was back to dialysis for me.

I have been fortunate enough to receive a second kidney after this accident, which to this day is still working well and without major issues. Since then, because of my immune-suppressant medication, I have suffered from small bouts of skin cancer here and there, but I consider this a small price to pay…

In 2004, I married my sweetheart and best friend Rachel. I cannot even begin to express how grateful I am to have her support day after day. Especially in the last few years, where I have not been able to work because of vision and mobility issues, which affect almost all aspects of my life, including speech. These are all accumulated side affects of Cystinosis.

It is next to impossible for someone like me to get life insurance. Every single major insurer and bank have refused me. The best rate I was offered was over $88 a month for a $25k coverage, from a small unknown insurer. An offer which, if you know anything about life insurance, isn’t exactly great.

Someone living with Cystinosis is expected to live to about the age of 50. I am 52 now, and I really don’t want to leave my amazing wife and best friend penniless. Rachel unfortunately has her own medical issues: she was diagnosed with Multiple Sclerosis five years ago. It was a scare, but luckily, she is not showing any lasting symptoms from her 2014 exacerbation.

Please help me, so that my wife has something when I’m gone.

Thank you so much.