His Life Depends On It

This letter was written by Jim and Erin Powers from Macomb County, Michigan. 

As a parent, there is nothing worse than how you feel when your child becomes seriously ill.

When our son Ryan was 3, he began swelling up like a balloon. After several misdiagnoses, he was finally diagnosed with idiopathic minimal change glomerulonephritis – a chronic auto-immune disease that causes his immune system to attack his kidneys. The idiopathic designation simply means that there is no known cause of his disease and, in this case, there is no known cure.

For the next year doctors pumped Ryan full of steroids, which have reaped havoc on his body- including cataracts in both of his eyes. We administered toxic medications, including chemotherapy, in order to try to bring Ryan into remission. Nothing worked and Ryan was hospitalized many times as he continued to relapse over and over again.

After chemotherapy failed, we became desperate and began investigating all types of alternative therapies that might help to mitigate our little boy’s disease. Potential was found in a seemingly unlikely place – medical marijuana. We found many reports of patients with various auto-immune diseases reaching long term remission after ingesting a concentrated oil that was derived from the marijuana plant. Ryan began taking the oil and, 5 days later, was in remission. Ryan then began his first long term remission since his diagnosis. My wife and I, obviously, were ecstatic.

That all changed quickly and turned to grave disappointment a month later when the Michigan Court of Appeals ruled that the marijuana oil we successfully used to keep our son in remission was not allowed under the MMMA. This meant that we were now at risk of going to jail and losing our child simply for administering our son a viable treatment option that was widely available before this nonsensical court ruling.

Disappointment quickly turned to anger, and anger turned to action. The law had to be clarified for Ryan, or any other patient who was relying on this medication to help improve their quality of life.

It was during this time that we began working with the National Patients Rights Association (NPRA) to lobby for legislation to correct two important issues: first, clarifying that patients can use non-smokable forms of medical marijuana, the other being the lack of access to that medicine in our state. House Bill 5104, is a bill to protect patients who choose to use non-smokable forms of medical marijuana, including the oil that Ryan was using and House Bill 4271, is a bill to establish a regulated medical marijuana testing and distribution system in our state. Our family testified in front of the House Judiciary Committee, where the bills where unanimously passed to the House floor. They were quickly voted on in the House and received overwhelming bi-partisan support. We were hopeful that the bills would receive a similar reception when they reached the Senate.

After the bills were passed to the Senate, they were assigned to Senate Majority Leader Randy Richardville’s Government Operations Committee on January 8th, and there they have sat ever since. The only meaningful event to take place since then was a single committee hearing in March that ended without a vote on either bill. Meanwhile, our family, along with many other families across the state, have been forced to make a chilling decision – either stop administering the only medicine that has had any meaningful impact on our child’s disease or continue to run the risk of arrest and potentially losing custody of our child.

Our family and many others desperately need Senator Richardville and the Government Operations Committee’s support and urgent action on both of these bills. Living in fear of our son’s condition degrading is a reality that we will always have to deal with; we should not have to additionally live in fear of arrest or losing custody of our son. This was our last resort and we are running out of time.

Please write or call Senator Richardville’s office asking him to immediately schedule a vote in his committee on House Bills 5104 and 4271 before the Senators go on their summer vacation. Our son’s health and wellbeing along with so many others in our fine state, quite literally, depends on it.

-The Powers Family

Jim and Erin Powers are the founders of Michigan Parents for Compassion and can be reached through the group’s Facebook page, found HERE. 

Contact Senator Richardville’s office by using this information:

Office Address:
S-106 Capitol

Mailing Address:
Senate Majority Leader Randy Richardville
P.O. Box 30036
Lansing, MI 48909-7536

By Phone: (517) 373-3543

By Fax: (517) 373-0927

By Email:
SenRRichardville@senate.michigan.gov
Please include name, address, and phone number.