I don’t usually post things I haven’t read, but I’m making an exception here. I literally cannot read this. I started to, and I can’t. But I do know what happened, and I want others to know about this.

Charly was six years old when she passed away two weeks ago from seizures. She has the same condition our daughter has. The family called 911, and when the police came, the mother mentioned that they had been using THC to treat her seizures. Which is illegal in their state.

Instead of behaving like actual human beings, the officers forced the grieving family out of their house so they could search it for THC.

If anyone ever wonders why I refer to the monsters who enforce these laws as monsters – please stop wondering.

If anyone ever wonders why I detest the state with every fiber of my being – please stop wondering.

This is not just about the war on drugs. It’s not even just about the state (although it largely is.) It is about our humanity. It is about blind obedience to authority, and it is about how so very many of us have sacrificed our humanity and our souls to an institution. There is no way any of us living in this time get to look back at any other period of history and shake our heads in disbelief. History is us. And we should be ashamed.

Here is Charly’s story, as written by her mother, who has asked for it to be shared widely:

Dear Mr. Groth, Mr. Cain, Mr. Phipps, Ms. Errington, Ms. Leising, Mr. Perry, Ms. Gates and anyone else I may have missed. 

I am writing to you today to share our story of our daughter Charilyn Curtis. We have always called her Charly. I am writing in hopes that our story may inspire the people needed in Indiana to change the current laws on cannabis. Our current law does allow people with uncontrolled seizures to get a medicine that does contain THC. However the means of obtaining this medicine in a timely fashion is ridiculous in my opinion. I’m sorry it has taken a moment for me to reply to your email. We have obviously had a very rough week. We had the services for our sweet Charly on February 12th. 

Charly was born on Oct 14, 2012. By the time she was 4 months old we knew something just was not quite right with her. She was already beginning to lag behind in milestones. I personally have 4 biological children of my own so I had the means of comparing her to her siblings. We started various therapies with First Steps before she was a year old. We were referred to Dr. Luis Escobar at St. Vincent hospital for a closer exam as she began to lag behind more and more. Dr. Escobar ran blood work on her because he suspected a chromosome issue of some sort due to her ears and her high pallet. It took months of fighting with Medicaid to get the tests ran for this. The testing is not cheap so they tried very hard to keep denying the testing. After about 6 months they finally were able to send her blood samples off for testing and we discovered that she did indeed have a chromosome abnormality. 

Charly was diagnosed with a chromosome duplication of the 15th chromosome, her condition is called Isodicentric 15. She had 4 copies instead of 2 of a critical area of the 15th chromosome. These two extra copies had attached to each other forming a 47th chromosome. This same chromosome causes Prader Willie syndrome if it is deleted. This particular condition affects only about 1000 kids in the world. It is suspected that there are more that just were never diagnosed and were just considered severely autistic. Her disorder caused low muscle tone, eating difficulties, severe developmental delay, autism and a high probability of seizures. Charly has always been way behind developmentally. It would take her months to learn one new skill. The doctors had told us they didn’t know if she would ever walk or talk. We were told she would need 24 hour care for the rest of her life. At the age of 4 Charly was finally tested for autism. She was placed as moderate to severe based on her testing. Her testing showed that she ranged from 12 to 18 months in all areas. 

We began ABA with Charly at the age of 2 ½, at first she attended ABC in Richmond, Indiana. She went there 3 days a week all day. Just before her 4th birthday we moved her to BAI in Muncie after a few issues we had with the previous center. She attended BAI all the way up to her death. She attended that ABA clinic 5 days a week from 8am to 5pm. Charlys development had slowly progressed over time. She was currently testing at roughly a 2 year old level. She was walking and talking a little. She still had a very limited vocabulary but she knew how to sign and also get her point across by taking us by the hand and leading us to whatever it was she wanted. Charly was a very bright girl with a strong desire to learn. It just took her months and months of repetitiveness to get a new skill to really stick for her. 

When Charly was about 3 we requested a baseline EEG to be done because we knew she was at risk of seizures. It was hightly recommended to have a baseline to compare to if and when the seizures did start. We began seeing absence seizures not long after that first EEG so we requested a 24 hour in hospital EEG. Both had came back normal, but yet the absence seizures continued and we began to see a few quick head drops. If these cant be caught on an EEG however it doesn’t do much good. The neurologist at the time Dr. Lisa McGuire refused to place Charly on any medication until she could catch something on an EEG. So after a few months of seeing these episodes happen more often and she had finally had one big drop seizure at her ABA center. We decided it was time to try a different neurologist. We switched her over to Dr. Ridel. Our first visit with him went well, he listened to what we had to say and what we were seeing at home, he read the notes from the ABA center on what they had seen and agreed that she was having seizures. He placed her originally on Lamicital. However she had an allergic reaction to that med so he switched her to Keppra. The Keppra seemed to work for quite awhile. Then we started seeing breakthrough seizures again. Dr. Ridel made a small increase in her keppra and again all seemed well for awhile. In early January we noticed Charly had developed what we thought was a tick or a behavior of some sort. She would go onto her toes and slam down to her heals and pop her head down really fast. She usually didn’t fall but did on occasion, she has always been a very clumsy child. So we just brushed it off at first thinking it was nothing more than a new sensory behavior of hers. She always needed lots of sensory input. 

I went into the hospital on January 11th for a 12 level spinal fusion to correct my severe scoliosis I was released and returned home on January 15th. During my absence David was caring for all 5 of our children. He had help coming in on occasion from our respite worker for Charly and from my sister Gina. On Sunday January 13th, Charly had her very first Grand Mal seizure it lasted 2 full minutes. On January 14th David called Dr. Ridels office to try to get her into see the neurologist ASAP. They told him it was a 3 month wait for an appointment. He fought with many people in that office until he was able to get her an appointment the following Wednesday Jan 23rd, at a different clinic that we had not been to before to see Dr. Ridel. In the time waiting for that appointment she had a few more grand mal seizures that were increasing in intensity and time. At that appointment Dr Ridel prescribed her Onfi and told him to call on Friday and let him know if it was helping. Dr. Ridel also noticed the strange tip toe thing and head movement that we thought was sensory behavior. He informed us that those were actually small head drop seizures and asked how many times a day that was happening. We told him it was happening off and on all day long. Like 50 or more times in a day! At this appointment she was diagnosed with Lennox Gastout Syndrome. Which is basically a broad term for multiple types of uncontrollable seizures. David tried to call that office 7 times that Friday, because the med seemed to be making her worse instead of better. The seizures were coming much more frequently, she was having stronger drop seizures, the absence seizures had returned and the grand mals increased in intensity. We never could get anyone to answer when we called, we left multiple messages and got no reply until the following week. So on Friday Jan 25th we decided to try THC. We have done a lot of research on the effect of THC on these uncontrolled seizures and had seen the benefits that the THC could provide for epilepsy. So we managed to obtain a THC brownie and some THC drops from someone that had just returned from Colorado. So the THC medication came from a reputable dispensary. So David tried the brownie on himself first because we needed to gauge how much to give her without having any negative effects. We gave her tiny pieces of that brownie that Friday and all that weekend. We also managed to obtain a bottle of low 

dose THC drops so we switched her from the brownie to the drops so we could control the dosing better. The doctor never returned our calls until Monday Jan 28th, we were told to begin to wean her off of he Onfi. On Monday Jan 28th Charly had an appointment with Dr. Escobars nurse practitioner who has seen her many times. David filled her in on our situation with Charly and the seizures and also told her what we had been giving Charly. She commented that in all the visits she had had with Charly over the last 4 years this was the first appointment she was able to actually examine her without her having a complete meltdown. We continued giving her 1.5ml 2x a day after this. She had a follow up appointment on Friday Feb 1st with the neurologist. At this appointment David informed the Neurologist’s nurse practitioner Jennifer Erwin, of what we had been giving her. He even told her if she felt the need to report us to go ahead. We were doing what we felt was best for our daughter. They wrote Charly a prescription for Diastat an emergency med that is only to be administered if a seizure hits the 5 min mark. They also wrote a prescription for Epidolex (cannabidiol) this is the only medication in the state of Indiana that is approved for uncontrolled seizures that contains both CBD and THC. This medication is only available to people with Lennox Gastout Syndrome or Dravets Syndrome in Indiana. We were told at that appointment that it could take 3 weeks or longer to get that medication because of all the “red tape” that it had to pass through before we could receive it. That same afternoon Charly had yet another grand mal seizure lasting 4 ½ minutes. We continued giving her the THC drops daily. It seemed to be the only medication that was helping. It wasn’t completely stopping them all but they were definitely decreased drastically. We attempted to send Charly to ABA on Monday Feb 3rd without any THC drops just to see if that was really what was making the difference. She had 2 grand mal seizures at school that day and was sent home early. We gave her the evening dose and we had no more isssues that evening. We resumed the THC drops 2x a day at 1.5 ml after that. Tues and Wed Feb 5th and 6th went by without any issues. 

We were getting very low on the small bottle of THC drops that we had. Low enough that we didn’t feel like we would have enough to last until the Epidolex arrived, so David made the decision on Wednesday Feb 6th to make a trip to Colorado to get more drops himself. We wanted to make sure it was the same medical grade drops from a reputable dispensary that is why he went all that way to get her more. Before he left he called my brother to come and stay with us because still being fresh from my spinal surgery I was still under a 10 lb weight lifting limit. So my brother came over that evening and cooked dinner for myself and all 5 of our children. Charlys evening was like any other evening, there was nothing different about her normal routine or her behavior. I rocked her to sleep in the living room like I have for the past 6 years. After she had been asleep for a bit my brother carried her to bed and tucked her in for the night. 

The next morning Feb 7th, all of my kids’ schools were on a 2 hour delay so we had a slow quiet start to the morning. Charly used to never sleep past 7 but the last few months if the house was quiet she would sleep til about 8am. I was supposed to meet her ride to her ABA clinic at 9:15am that morning. So at 8:15 or so I went down to the hall to wake her up. I went into her room, she normally would pop up and great me with a happy “HI, Good Morning” and she didn’t. I unzipped her bed (she has a noah bed for special needs kids since she was a flight risk” and saw her laying face down in the bed. I placed my hand on her back and said her name…. I got no response. I did it again a little more forcefully and still got no response. I immediately turned her over and noticed that her lips were blue, I grabbed her up as fast as I could and screamed for my brother to call 911. He met me half way down our hallway and took her from my arms and headed outside to the truck saying there is no time to wait. So we got into the truck and he 

handed Charly back to me. I immediately began CPR on her. She was not breathing, she was so cold and her legs were already stiff….. i called 911 from speaker phone to tell them we were on our way in with her. They ended up meeting us about half way from our home to the hospital in the Kroger parking lot. The first on scene was just an officer, then a car pulled up and a woman came running saying she was a nurse. She took Charly from my arms and put her in her back seat and began CPR again and chest compressions. The ambulance arrived and loaded Charly up. I wasn’t allowed to ride with her. This nurse (Lorri Webster) whom I had never met offered to take me to the hospital so my brother could return to my house and get my other kids. On our way to the hospital I attempted to reach Dave, he had arrived in Colorado not long before all this happened. I texted him and then had to call him 2x to wake him. He had just checked into a hotel and had only been asleep for about 45 min. I didn’t have much time to talk to him yet just to tell him she was headed to the ER and it didn’t look good. I arrived at the hospital long before the ambulance arrived with Charly. While waiting I was able to call David again but didn’t have any more info to give him. I didn’t have cell service when I went back to the ER so he began calling the nurses station and they wouldn’t give him any answers over the phone. When they finally did arrive someone came out to talk to me to tell me that it wasn’t good. They asked if I wanted to come back to see her, they were still working on her but too much time had passed and it was time to code her. They gave the me opportunity to be in the room when that happened. Charly was coded at 8:55am on the morning of Feb 7th 2019. I was able to hold her in my arms after that and hug her and kiss her. Eventually David was able to get the nurse to get me on the phone when I had to tell him that our baby girl was gone. He was angry, upset and surprised all at once. I begged him to get onto the first flight home because the kids and I needed him. He had never flown until that day. He still had to wait 2 hours in Denver to get the first flight out and wasn’t in Indianapolis until 3pm that afternoon. I was questioned by 3 different people, one was a state cop, one was a county cop and one was a detective. They all asked the same questions over and over again. I had told them all and told the doctors and paramedics she was epileptic and that we had been waiting for that med to arrive so we were giving her THC instead. At no point did I ever try to hide anything from any of these people. They said they needed to come out to my home to do an investigation. They told me it was protocol when it was a child under 18. I agreed my brother went with them down the hall because I had advised them that we had a large male great dane that wouldn’t let them just walk in. Someone needed to come inside and put him up so that he wouldn’t become territorial with no familiar faces here. We headed home about 15 min after I thought they had left to head to my home. We arrived home to find 4 police vehicles in our driveway and them all standing on my front porch. It was pouring rain that morning and we had all came home in 4 separate vehicles from the hospital. My brother then called to see where I was, he was still at the hospital. When he had walked away with them and left us under the impression they were leaving for my house they actually pulled him aside to be questioned also. My sister went to our porch to attempt to let them inside and put the dog up but they said they were waiting on the lead detective so they couldn’t go in until they arrived. The detective finally arrived about 20 minutes after my brother did. So by this time we had been sitting out in the rain for over 30 min. A DCS worker also came to the scene and once again we were questioned about the week prior, the night prior and that mornings events. Both my brother and myself were drug screened by DCS while still waiting to get into my home. It took them 3 hours to finish whatever they were doing inside my house before we were allowed to go inside. They had confiscated the THC drops which I understand, they are illegal in Indiana and at this point without my baby girl I didn’t need them anymore anyway. But they literally went through every nook and cranny in my house. They searched all of our closets and everything. Items were moved around so it 

was easy to tell they left no stone unturned. They took all of the bedding off of Charlys bed where I had found her unresponsive that morning. We still have not heard anything about if or when that will be returned to us. We have had to meet with DCS multiple times in the last week so they could interview each of my other children twice. All the while we are grieving the loss of a sweet 6 year old girl. We were trying to make her funeral arrangements and were receiving calls left and right for more questions to be answered. David of course feels guilty for not being here with us, he thinks he would have heard her and been able to prevent this. I feel guilt for not hearing her and not checking on her at 3am when I woke up to use the restroom. My children are in turmoil over the loss of their baby sister. They refuse to sleep alone, most refuse to even sleep in their beds. My son who is the closest in age to Charly has spent 5 nights out of the last 8 with other family because he doesn’t want to be in this house. When he is here he will only sleep in the living room and makes me sleep in there with him. He doesn’t want to go near Charlys bedroom because of all that has happened. My girls feel guilt for not helping more over the years or for not spending time with their sister like they feel they should have. Grief and sorrow has taken over our lives. We are lost without her, our house feels empty without the chaos that Charly created. Its too quiet here now, she was always being loud even when she was super happy. We are going through the motions of life as best we can but we are still reeling to figure out what kind of life we are supposed to have now. My kids didn’t attend school all week this week. They are terrified to go back. David and I have not been left alone for one single night since this happened. Our kids are trying to find peace by going to other friends or families homes to distract them from this reality. However at least one kid has stayed home every night because they are worried about mom and dad. My sister has even stayed a few nights because she doesn’t want to be alone. She was home alone the morning that she got the call that we had gone to the ER. Our lives are completely changed and scarred by this. No one should have to lose their child, especially at the age of 6. Most definitely when it might have been prevented had the laws in this state been different already. Right now we are living our lives one day, one hour, one minute at a time. It’s the hardest roller coaster I have ever ridden and there seems to be no off button to stop the ride. Charly and her special needs consumed every part of my life as her mother. I have lived this life of insanity for years now. I do not know how to live any other way at this point. The calmer things become here the more I want to fight for my girl, fight for what needs to happen in this state, fight for all the other kids who cant fight for themselves!!! 

At this time all I know is the interviews with DCS are supposed to be complete, they found no cause for foul play and will just be making a monthly check in with us from here forward. However the investigation is still ongoing and I have not been given any updates. I have spoken to the coroner myself and he said her autopsy all looked normal to him. He was sending off a few tests so he could give us the exact cause of death but at this time those results are still not back. We held her service on Feb 12th 2019. Over 300 people showed up to show their support and tell us of the ways our girl touched their lives. She has had many therapists over the years and I believe all of them came to the service. Every single employee at her ABA clinic attended her service. The funeral home director told us he had never had a service so large. Her service ran from 5pm to 11pm. We miss our sweet angel so much. We may not have been able to change things in time to help her, but there are many other children and adults suffering with epilepsy, chronic pain and other issues that medical THC can help. If it had been legal here already our girl may still be with us. It is time for Indiana to make a change. No more lives should be lost when something like this can save so many. I know it can be abused by many but the benefits it can provide out weigh that for me. I have always been against marijuana of any form. Until my daughter started having issues and I really saw the help it gave others and then her, I was straight up against it. 

My mind and my heart have been changed to want the change. If this can change my mind about medical marijuana, I fully believe that I can change the mind of others. Its time for our voices to be heard. I will not let the loss of my child be the end of this for me. This is a fight I will fight for all those out there like my daughter!! This is a fight I will not stop fighting for, this fight gives me purpose right now, it gives me strength and most of all gives me hope for a better tomorrow. 

I beg you all to share our story, our names anything you need to. Let me know if release forms need signed or if you want me to come and speak directly with anyone. I will gladly meet anyone who can help me fight for my girl and all those like her! 

In loving Memory Of: 

Charilyn (Charly) Curtis 10/14/12 – 2/7/19 gone way too early…..

Sincerely 

Heidi Curtis