Multiple Synostosis Syndrome
Dear Dr. Grinspoon
I am sure you get many letters. I will try to keep mine short. THANK YOU! YOU help me move forward in many ways.. mostly as a mom.
My son has a progressive to terminal bone disease, Multiple synostosis syndrome. Diagnosed at 4. We knew something was wrong because of the agonizing pain and screaming that he has endured every day of his life. He is slowly losing his hearing, eyesight, joints have already fused on fingers and toes and now his spine is causing him much pain as all his joints.
Initially it was stated by Drs. that he might only live to be 12. He is 18. For this I thank God daily. Although you can imagine what this did to my mind. Thinking and watching the pain. Watching him suffer all these years, no treatment no cure has been very difficult as you know. Not to mention my fears of the future. I know you understand as a parent. I am very sorry for your loss. Thank you for being so brave and standing up for what is right. You and your family.
Cannabis has changed my son's life. It have also saved ours. Watching our son helplessly... Then to have him control his pain after only a couple of uses! He now medicates all day. He became legal at 15 in Canada. Before Cannabis I was like the millions of others. Pot was something to get stoned =feel good.
God has chosen to educate me in a way that I pay attention. When they said "no treatment no cure" I learned to pray. I am very passionate about all I learn and have witnessed now for the past 4 years. As a family, the fact now that we have to worry about our son's medicine on top of everything else is - sad.
Now, I worry about someone attacking him - or worse a police officer not believing and roughing him up. I'm a mom I worry. BUT my fear is put aside when I see he is not suffering like he was. LOVE is stronger than fear. My fear of watching him suffer is far greater than any other fear I have. I want it legalized. Un-dramatized.
I have always been a cartoonist. But now I am a cartoonist with a mission. I don't want to worry about my son's medicine. I will not be ashamed of what has given us HOPE. EASED suffering. If you get a chance I hope you look at a few of my cartoons. It is what I do. I draw to keep sane, distract and try to be positive. Every cartoon is inspired by LOVE.
The strip (The Happy Hippie- changed now to Cultivating Compassion) is starting to get quite a bit of attention and will be in 3 major magazines in 2011. I really think this is the path I am to be on. So does my son and husband.
It is still hard. I am amazed at the cartoons I come up with, I hardly feel like drawing some days. MY son is the love of my life. He is my inspiration and keeps me going. People like you. YOU keep me going.
With Love and respect,
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