Local family moves to Colorado to help their daughter
By Tina Snell, Staff Writer
Minnesota is currently in the throes of the medical marijuana issue. Monday, a proposal allowing marijuana to be used for different ailments in the state was approved by the Senate Finance Committee 14-7. Late Tuesday, the Minnesota Senate passed the bill 48-18, with provisions for 55 dispensaries across the state, treatment centers for those with specific medical needs and the issuance of identification cards for those who are qualified to use medical marijuana.
From there, the bill goes to the House, but is expected to be more restrictive with no provisions for those suffering from chronic pain or from post traumatic stress syndrome. Some opponents of the bill have concerns about kids abusing medical cannabis.
Neither the Senate or the House advocate the legalization of smoking medical marijuana, just other approved forms of dispensing.
If the law passes, Minnesota will be the 22nd state to protect medical marijuana users.
One family is watching the process carefully. Jason and Marie Jay recently moved from Fort Ripley to Colorado to have access to medical marijuana for their daughter, Jenna.
Jenna, an 8-year-old twin, has intractable epilepsy, a disorder in which the seizures are not being controlled by medication. Her epilepsy is due to a brain malformation which occurred before she was born.
“Her clinical diagnosis is subcortical band heterotopia (abnormal brain development) and pachygyria (a condition due to abnormal migration of nerve cells in the developing brain and nervous system),” said Jenna’s mother, Marie. “We first noticed some developmental delays when Jenna was about 3 months old and she wasn’t meeting her expected milestones.”
The Jays’ pediatrician told them that since she was premature, they could expect some delays and to just keep an eye on her.
“At her sixth-month appointment, we knew something was wrong when she was significantly behind her twin,” said Marie. “We were referred to the Gillette Children’s Hospital in St. Paul. A pediatric neurologist ran some tests and learned Jenna had a very large band of gray matter around her brain. We were told it was like a birthmark, so it wouldn’t get better, but it would not increase in thickness, either.”
That’s when the Jays were told Jenna would have seizures, that she may not be able to walk and could possibly have very significant physical disabilities.
“When Jenna was 18 months old, she had her first seizure and we put her on her first pharmaceutical,” said Marie.
As the years progressed, Jenna’s seizures increased in number and intensity. Her care was transferred to the Mayo Clinic in Rochester.
“They took great care of us, but we didn’t make a lot of progress at all. Jenna failed more than 20 pharmaceuticals, a Vagus Nerve Stimulator surgery (a device used to treat epilepsy patients whose medications are not effective) and a low glycemic diet,” said Marie.
Jenna was receiving more than 14 pills each day. The family watched as the effects of the drugs took over her life which included headaches, stomachaches, dizziness, fatigue, irritability, constant kidney and bladder infections and other possible damage to her organs.
“All this without any control of her seizures were more than we could handle,” said Marie. “When we heard about a CNN special regarding medical cannabis, we were intrigued. It was like the glimmer of hope we had been looking for.”
Jenna was having a variety of seizures: grand mal, partial complex, absence and atonic or drop seizures. She experienced more than 300 per month and many required CPR. She almost lost her life several times.
“One of our fears would be that her life would be taken way too soon,” said Marie.
In October 2013, the family made their first trip to Colorado and met with members of the Realm of Caring Foundation, an organization which helps families who are relocating to Colorado.
Jenna saw two physicians there and both agreed she would be a great candidate for medical cannabis.
In order for a child to receive the drug in Colorado, they must be a resident and have two doctors sign froms stating its use is a medical necessity. Many pages of paperwork need to be completed and sent to the state. If accepted, a red card is issued allowing one to purchase the marijuana.
“We had no idea if it would work or if we would lose everything, but it was worth a try to save our daughter,” said Marie. To Marie and Jason, it seemed the option seemed safer than any medications, surgeries or diets they had already subjected Jenna to.
“Jason and I had many sleepless nights, but knew God had this plan for us. So we put our house up for sale and within two months we were packing up our family to move to Colorado,” said Marie. “We both quit the jobs we truly enjoyed, took our kids out of their schools and we left behind family and friends. It was by far the scariest decision of our lives.”
When the Jays got to Colorado, they learned that Charlotte’s Web, a strain of medical marijuana processed into an extract with a high cannabidiol content and low in the component which gets most people high, was not available as promised and wouldn’t be until October 2015. They were crushed.
But then they found out that THC-A, comparable to Charlotte’s Web, was available.
“Medical cannabis comes in oil form and without the ability to get high,” said Marie.
Other ways medical cannabis is administered is through vaporizers which gently heats up cannabis, releasing fewer of the harmful components which comes from smoking. Another way is by eating which is slow to kick in and slow to wear off, better for those with chronic pain. It can also be made into teas, tinctures or salves.
“Now that Jenna has started medical marijuana, her seizures have been reduced to 50-75 a month,” said Marie. “She is off seven of her pills and is feeling great. She is less lethargic, happier, more coherent and developing a personality that we have never seen before. It is like meeting our daughter for the first time. We know without a doubt that we made the right choice and we are slowly getting our daughter back.”
The Jays plan to stay in Colorado for the time being, but would eventually like to return to Minnesota.
“We are hoping Minnesota will legalize medical cannabis so others who are suffering can have a chance at a happy, healthy life like Jenna is just starting to experience,” said Marie.