Reilly Jakubiak is shown in March.
WEST RUTLAND — A West Rutland woman said federal drug laws are preventing her from getting a particular type of medical marijuana she believes might help her son, who is battling an extremely rare genetic disorder.
Irene Jakubiak’s son Reilly Jakubiak has KCTD7, a genetic disorder so rare the family only knows two other kids in the United States who have the disorder.
Kids with KCTD7 usually develop normally until about 2 years of age, and then begin to regress.
Reilly’s brain is inundated with constant seizures that, while not seen on the outside, have damaged his brain.
At one time, the 7½-year-old was able to walk, say simple words and drink from a straw.
But today, he has regressed to the level of a 6- to 18-month-old infant.
In August, over the course of a 24-hour period, he lost his ability to walk and sit up.
“He’s regressed pretty rapidly in the last six months,” Jakubiak said.
Irene and her husband Chris said Reilly began to show some signs of KCTD7 at about 2 years of age, and had his first seizure at 26 months. At 3½ to 4 years of age, he began to become unsteady on his feet and began to choke on liquids.
It was in this past year that he really began to go downhill, his mother said.
But the Jakubiaks have found a glimmer of hope in a Colorado girl also suffering from a seizure disorder and the organization working to provide her with a treatment that has worked for her.
Charlotte Fiji’s mother Paige Figi has been working with a Colorado-based organization called Realm of Caring, which promotes the use of medical marijuana in appropriate cases and is working to help families find loopholes in the law if they exist.
Charlotte has Dravet Syndrome, which was causing more than 60 seizures per day. Doctors told the family that Charlotte had “reached the end of the road.”
“They were told their daughter was going to die,” Irene Jakubiak said. “They were told they needed to sign a do-not-resuscitate order and go home and love their child and wait.”
But Paige Figi heard about a family successfully treating a seizure disorder with medical marijuana, and through the Realm of Caring organization and under the care of her doctors, she began to administer cannabidiol, or CBD, which is a type of cannabinoids found in cannabis.
The CBD is extracted from the plant without the THC, which is what causes the “high” from marijuana.
Today, Charlotte Fiji is no longer on any pharmaceutical seizure medicine and has regained a lot of her abilities, Irene Jakubiak said.
The Jakubiaks recently attended a presentation at the University of Vermont where Josh Stanley, one of the brothers behind Realm of Caring, said the particular strain of medical marijuana now called Charlotte’s Web has a 90 percent effective rate in children with epilepsy.
Paige Fiji said her daughter does experience a few side effects — she might get really hungry or really sleepy.
In Reilly’s case, the newest of his five seizure medicines has side effects that include liver damage, vision and heart issues, and it may change his skin color.
“Being hungry and sleepy is not a huge side effect when your kid has been seizing,” Jakubiak said. “They say it can cause brain damage, but the seizures are already causing so much.”
The Jakubiaks have been considering medical marijuana for about the past year, but have become more determined in the past three months.
“It’s been in the back of our brains,” Jakubiak said. “It just seems like a crazy idea.”
The crazy part now is they can’t even try it unless they move to Colorado.
Charlotte’s Web is only available in Colorado and, as a Category 1 drug, there are mandatory penalties for possessing it outside Colorado, just as if it were heroin.
This is despite the fact that Charlotte’s Web is high in cannabis and low in THC — about 28 to 1, Jakubiak said.
“Technically, this is a hemp,” Jakubiak said. “If this plant was in another country, we could have it shipped to us.”
The Jakubiaks said the problem is with federal law, but if people want to see change, they should contact their state and federal politicians.
“Definitely, the guys in Washington need to be bombarded,” Jakubiak said. “But, we can’t just do it in Vermont. If it’s going to change on the federal level, it’s got to come from all 50 states.”
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