Dan Patrick, This Is For You

The following is a letter I sent to the Lieutenant Governor of Texas recently. Mothers Advocating Medical Marijuana (MAMMA) hand delivered a stack of similar pleas from other desperate members of our organization who need his help to get House Bill 1365 passed this legislative session.

Dear Lieutenant Governor Patrick,

I am the parent of a beloved 15-year-old young man who has a degenerative condition of unknown origin as well as severe/non-verbal autism, intractable epilepsy, chronic kidney disease, and a rare endocrine disorder that has caused irreversible calcification to his kidneys and his brain. I am writing to you to implore you to assist in passing sensible medical cannabis legislation to expand our current program and help children like mine who are suffering greatly and have run out of safe, legally available medicines to treat their conditions.

I was the first person to purchase the high CBD/low THC oil at the Compassionate Cultivation dispensary near Austin, and I did so with the cautious optimism that it would finally be the medication that would give my son relief from his seizures and intense mood swings, aggression towards his family and teachers, and self injurious behavior. While this medicine did reduce his seizures somewhat in number and duration, he does still experiences very frightening seizures every couple of weeks that cause him to stop breathing, turn blue and aspirate. I assure you that these never become easier to witness as a parent, and with every one I cannot help but wonder if this will be the time where his body is unable to begin breathing again. This high CBD/low THC medicine also did not do anything to address his discomfort, irritability and frustration from his pain and lack of ability to communicate, and as such, our family is not able to access our community together and must hire caregivers for our son if we want to do anything outside of our home.

Our medical providers have witnessed firsthand my son becoming fearful and highly aggressive when we have tried to take him to doctor’s appointments. They care about him and care about our family, but have few options to offer us as treatment and therefore only have very frightening antipsychotic medications to offer him like Risperdal. Risperdal comes with a black box warning. When your child’s health is already so precarious, it is nearly impossible to consider adding in a medication that could cause additional severe conditions or even death.

My husband and I are hard working, upstanding citizens of this state. We are law abiding tax payers here in Austin and in Marble Falls. We do not want to risk losing our son to child protective services by purchasing cannabis with higher levels of THC in surrounding states or on the black market, but have become so desperate in our quest to help our child feel better that we have considered it.

We also have a typically developing, amazingly kind and empathetic 12-year-old son in our home. This child will be a leader in our state one day, I am certain of it. But for now, he lives in a home where he witnesses his once gentle brother devolve into aggressive episodes towards his parents leaving us all bloodied and bruised. He witnesses his brother stop breathing and has learned to stay calmer than most adults I know. He tries his best to accept why we don’t go on typical family vacations or to the movies or to restaurants. He gives me hugs and tells me, ‘Mama, it’ll be alright’ when I cry to him about his brother. We try our best to give this beautiful child the most ‘normal’ life we can in the midst of a very chaotic situation, but it is becoming increasingly more difficult to do so.

Can you please help us? Can you please give House Bill 1365 a hearing and then allow it through the senate with no further amendments?

My son’s condition is irreversible. He is not a candidate for dialysis as it takes at least four adults and the use of a sedative to simply draw blood from him. When the time comes that he needs kidney transplants, a new kidney would last only a couple of years before the calcification from his endocrine disorder would likely cause them to fail again.

I am a mother begging for your empathy and help in passing legislation to help my son have a better quality of life.

Respectfully,

Debbie Tolany

I don’t have any way of knowing whether that letter actually got read by the lieutenant governor, but one can hope. If you are a resident of Texas, would you please take a moment to call Dan Patrick’s office and implore him to schedule HB 1365 for a hearing? You will likely have to leave a voicemail, in which case you should leave your name, city and call back number along with your message. Tell them if you know my family and why this bill could be the key to a better of quality of life for Miles. (To clarify that point, it is the therapeutic research and review portion of this bill that would directly benefit my son) Or tell them your own story if this could help you or your child. Be respectful but firm. HB 1365 passed through the house earlier this week with 129 ayes. A bill with that much bipartisan support deserves its chance to a hearing in the health and human services committee and not to be held up simply because one elected official in power has decided he does not personally support it. Medical marijuana expansion is on both the Republican and Democrat party platforms and 83% of Texans are reported to support it. Here are the important phone numbers if you are able to call. It truly does make a difference, and my family would greatly appreciate it. Call daily! There is not much time left in this session!

Lt. Gov. Dan Patrick: 512-463-5342

Governor Greg Abbott: 512-463-1782

Health & Human Service Committee Members:

Senator Kolkhorst 512.463.0118
Senator Perry 512.463.0128
Senator Buckingham 512.463.0124
Senator Campbell 512.463.0125
Senator Flores 512.463.0119
Senator Johnson 512.463.0116
Senator Miles 512.463.0113
Senator Powell 512.463.0110
Senator Seliger 512.463.0131

If you would like to know more about the details of this bill, why it would help so many, and how you can get involved, please feel free to message me. I would greatly appreciate it if you could share this post as far and wide as you can! Thank you!