Monday, February 23, 2015

Hemp Bill Hearing 2/17/15

Owen and I returned to Topeka last week for a hemp bill hearing on the House side. This bill would not legalize whole-plant medical-only cannabis, but it would legalize three or four high CBD strains that could potentially really help Owen. And since whole-plant legislation seems so far down the road for these lawmakers in Kansas, this is really our only option currently.

The hearing experience was a bittersweet one. Owen and I were sitting in the front row right behind the testimonial podium. We were directly in the House committee's line of sight. During a testimonial, Owen had a pretty bad seizure. I was fortunately holding him, so I quietly consoled him as I always do while he fell asleep. After the person testifying at the time was finished, the committee had a chance to ask questions. Rep. Kevin Jones from Wellsville publicly asked me if Owen had a seizure a couple of minutes ago. He was speechless. His face dropped when I replied "yes." He couldn't find any other reply other than, "I'm so sorry. I don't know what else to say. That was just really difficult to watch."

From that moment on, I felt the entire committee's eyes on Owen. They witnessed five more seizures in his sleep in the remaining 30 minutes or so of the hearing. A few of them approached Owen and I after the hearing, introduced themselves, acknowledged they had witnessed his seizures, and offered their support and empathy. Though I absolutely do not want Owen to struggle with seizures, I am at least grateful that the committee saw firsthand what this kid endures on a daily basis.....and I hope that vision stays with them as they vote on this bill.

Thursday, February 5, 2015

Links and Updates about Senate Hearing 1/21/15

Gavin and I took Owen up to Topeka a few weeks ago to testify on behalf of legalizing medical cannabis for Owen to access. My dad, sister, brother, and friends Vicky and Haley Batchman all made the trip up to the Capitol to show their support for Owen. Below are a few media links from the hearing:

Here are some pictures of our debut at the Capitol:

Click for Options        Click for Options        Click for Options

                      Click for Options      Click for Options

An update on how things are progressing.......
I received a flood of positive support and encouraging reactions from all avenues, including committee members, friends and family, media outlets, and complete strangers from every generation and walk of life. The one person who sat emotionless and less than moved was the one person I needed to crack....the chairperson of the Public Health and Welfare Committee, Senator Mary Pilcher-Cook (R-Shawnee). While everyone in the room seemed drawn to tears from hearing my testimony about Owen's hardships, she did nothing. It was pretty devastating to come to the realization that not everyone wants and will do what's best for our son. However, I am not defeated and have a few options to pursue, including:

1. Continue to open the lines of communication with the Senate Health and Welfare Committee. I just found out last night that if we can persuade at least 5 committee members to vote that SB9 deserves a democratic process, instead of being hushed by one opinion who's not seemingly representing the voice of the people of Kansas, then SB9 could in fact progress to a formal hearing. I know these committee members are compassionate and believe in the way our governmental system works; I am confident they will side with Owen and these other sick children.

2. I am also working to get medical cannabis amended onto another bill, a House bill this time. It is called "The Right to Try" bill, in which terminally ill Kansans would be able to use non-FDA approved or experimental medication for a debilitating or fatal illness.

3. A Hemp Bill is being introduced as we speak. Although this bill would possibly be too specific for Owen, it would be a start in the right direction....and we will take anything we can get at this point!

4. The House also has a similar medical cannabis bill, HB2011, that somewhere down the road could be a possibility if these other three scenarios don't pan out. I am beginning to reach out to House Health Committee members, hoping that these individuals will invest in Owen's well-being.

Well, there you have it, this is how I've been spending all my time these days! Speaking of spending my time, I have been in contact with our bishop from the Dodge City diocese, Bishop John (who by the way, seems to love Owen!). I wanted his opinion on the ethics involving medical cannabis and whether or not the Catholic church approves. He overall--based on a couple of emails--seems supportive. He is also coming over to our house for lunch this Sunday to discuss it further. Please wish us luck, and cross your fingers that Dex (or Gavin) doesn't say anything inappropriate!!!! :/

As always, we are so thankful for everyone's unconditional support for our family, especially for Owen. That kid is a rock star, and Gavin and I are just glad you all love him like we do.