Hope can be a powerful force.
For years, Trumbull moms Joy O’Meara and Ashley Deaso had braced themselves for a life without their children Jamison and Reagan, who suffer daily from uncontrolled, life-threatening seizures.
But now — with the proposal Senate Bill 1064, which would allow medically fragile children with serious complex health issues to have two doctors sign off on them receiving medical marijuana in oil form to treat their life threatening conditions — there is a light at the tunnel of fear.
“About three years ago, I began to prepare myself to not have my son forever, and I know Ashley feels the same way,” O’Meara said.
“We live day to day; we hold our breath every time they have a big seizure, and we prepare for the worst,” she said. “We’ve held on to hope this whole time, and now we believe we have it.”
The bill did not receive a Senate vote on July 6, but the moms are motivated to push for it to be approved sooner rather than later. Because the medical bill could save lives, they’d like for representatives to hold a special session.
“Families that have given children this oil are seeing immediate results,” O’Meara said. “Some who have seen 100 seizures a day are seeing none. Their kids are sitting up and babbling.”
‘I had a typical child’
Jamison was born healthy, and was a perfectly healthy child for the first 17 months of his life, O’Meara said. Then the first seizure happened and he completely regressed.
“He lost his speech; he didn’t know us anymore,” she said. “He regressed so much to the point where he was like was an infant — he couldn’t feed himself or communicate with us.”
What started as one seizure quickly spiraled into a pattern of multiple seizures a day.
“He started to have hundreds and hundreds of seizures,” O’Meara said.
“I don’t think people realize what seizures do,” she added. “I had a typical child, and now every single day he struggles.”
For Deaso, her story of Reagan’s seizing patterns started at an even earlier age, when the child was only four months old.
“She went from developing normally to suddenly having no eye contact, no smiling, no arm or leg movement, because of the seizures,” she said. “At that time, she was having over 500 seizures a day.”
And they’re not the kind people generally think about when they hear the word seizure.
“It’s not whole body convulsion,” Deaso explained. “She has what is known as atypical infantile spasms — they don’t even fit on the spectrum. Doctors said never seen EEG pattern like hers.
“The seizures left her so unresponsive that they even checked for spinal cord injuries along with every genetic and chromosomal test available, and everything came back negative,” she said.
With the problem growing worse and worse by the day, the moms had no choice but to test different trials of medication on their kids.
“We tried 14 different rounds of medication,” O’Meara said.
The results were far from positive.
“He gained so much weight from medication that he couldn’t move because he was so swollen,” she said.
“All these pharmaceuticals haven’t given us the cure to the seizures,” she said. “He still has all different types of seizures — they vary in length and they vary in severity…
“No one has a cure — not for this type.”
Similarly, Deaso said Reagan has also been on 14 different rounds of medications, including a high dosage of steroids. The results have yet to yield satisfactory results.
And that’s why she’s looking towards cannabidiol (CBD oil) as a possible solution.
“The argument that marijuana is a hallucinogen comes from people who don’t understand the issue,” Deaso said. “The CBD oil has no THC in it…
“All the medications our kids are on are hallucinogens — the benzodiazepines they’re on are much more addictive and are deadly to withdraw from if you’re healthy adult, let alone a child with epilepsy,” she added.
Deaso said Reagan’s epilepsy has resulted in respiratory failure that has left her in the hospital for five months at a time.
“In the last five years, she’s been in the hospital more than she’s been out of it,” she said.
“We’ve prepared ourselves many times that we wouldn’t be going home with her.”
O’Meara said Jamison’s medication cause similar problems, like a weakened immune system that renders him unable to leave the house on cold days in the winter and hot days in the summer.
“If you saw Jamison on days where he’s on his maximum meds, he can’t get off the couch,” O’Meara said. “It’s heartbreaking seeing them on that type of medication.”
Leaving home for weeks and months on end has become routine for O’Meara and Deaso as they fight to save their children’s lives.
“We’ve been to the hospital 30 times in the last six years,” said O’Meara, who has had to work waitressing jobs in between stays just so she can afford the hospital bills. “We’ve been to Columbia; we’ve been up to Boston; we’ve been to Yale-New Haven; we’ve traveled down to Johns Hopkins in Maryland…
“It’s been difficult,” she added. “I’ve had to leave my other child, for weeks on end.”
“This is our life,” added Deaso, who’s insurance company has been unable to cover the in-home nursing services Reagan requires.
“We’ve been fighting for months now, but they say she doesn’t have the medical needs to qualify even with being tube fed, on a BiPAP machine and oxygen when sleeping, and needing deep suctioning and breathing treatments.”
Around every corner there’s been resistance.
O’Meara was joined by Wilton moms Dana Haddox-Wright and Lindsey Clark in June when she met Representatives Gail LaVielle (R-143) and Thomas O’Dea (R-125), as well as State Sen. Toni Boucher (R-26), in an attempt to show legislators the faces of moms trying to keep SB 1064 alive.
“We were met with a scowl and nothing more from Senator Boucher,” O’Meara wrote on her Facebook page titled Help Pass SB 1064 CT.
“Representative O’Dea told us why he did not support this Bill as it is currently written and even offered some helpful advice,” she explained. “He serves on judiciary and would be a great person to contact in the future.”
However positive O’Dea was about the bill’s future, the moms received the opposite from Boucher.
“Senator Boucher was so unwilling to hear us or even offer words of comfort to us,” O’Meara said.
The ignorance from politicians is what has left O’Meara and Deaso more frustrated than anything else.
“I was told to go out on the streets and buy it,” O’Meara said of one legislator’s advice.
“He said, ‘don’t worry, Joy, you won’t get thrown in jail. Our children are on feeding tubes and I’m being told to go out on the streets to buy drugs — and that’s not even what I need; that just shows their level of ignorance and how much they don’t understand about the subject.”
Another told her to move out of Connecticut and relocate her family to the nearest state where CBD oil is legalized, which is Maine.
“You’re right, I can just move. But guess what? I have a home in Trumbull and I have a 14-year-old girl who’s starting high school who I’ve left hundreds of times. Even if I did leave I wouldn’t know where to begin.”
Boucher has labeled the type of medical marijuana O’Meara and Deaso are seeking to get legalized as a “gateway drug.”
“This is not a bill to get children to smoke marijuana,” Deaso explained.
“It’s not a gateway drug — that’s false,” she said. “Our children are on some of the hardest pharmaceutical narcotics out there.”
O’Meara said Boucher’s “narrow scope” has limited her perspective.
“She hates drugs but I don’t think she realizes that we hate drugs, too” she said of the senator. “We’re not promoting recreational use of any drug — we’re promoting a medication, and we don’t think government should stand in between parents and doctors who want to make these decisions.”
“These are two separate fights,” Deaso added. “We’re not saying to legalize it recreationally; this is a completely separate use.”
Starting the conversation
As negative as some of the comments are that they’ve received about their fight to pass SB 1064, Deaso believes education can truly be inspired only through conversation.
“A lot of people are willing to take such a tough stance on this issue without educating themselves and that’s the problem,” she said. “I haven’t heard one good argument against its use and that’s what’s frustrating.”
Deaso added that she wishes politicians could see it from the perspective of losing their own kid to a fatal disease.
The problem isn’t just short-sightedness though; rather, it’s a prime example of institutional failure, the mothers said.
“Government and big pharma are so closely linked — they’re so deep in each other’s pockets — that it doesn’t benefit them to legalize it,” Deaso said. “The sad fact is lots of money goes out every month for medications that simply don’t work. Regan’s seizures are the best they’ve been with her new medications and she’s still seizing 30 to 100 times a day.”
O’Meara and Deaso realize their fight belongs in Connecticut where SB 1064 faces several hurdles, including revising the language to gain support from the state’s epilepsy foundation as well as its Medical Marijuana Committee
“We need to contact the Epilepsy Foundation of Connecticut and ask them what it would take for them to support a bill for medical marijuana for minors in our state,” O’Meara said. “They were opposed to the bill in current form.”
Additionally, they need to figure out the strands of marijuana their kids might need in case the bill does pass.
“We don’t know what we need yet,” O’Meara said. “There are centers that cultivate it in states where it’s been legalized but there are not many of them.”
Both moms said that even if CBD oil does not cure their children, fighting for SB 1064 is a worthy cause.
“I believe it’s worth the fight if one child in our state is saved,” O’Meara said. “No parent in Connecticut should lose their child when the possible treatment is available in other states.
“If this works for Reagan, and not for Jamison, then I will celebrate like it was my own child,” she said.
Direction and purpose
While it’s easy to get distracted on what lies ahead, the mothers appreciate the fact that they at least have a direction now.
“We had no hope for years, now we do,” O’Meara said.
“We didn’t have a cure until recently — until we heard about medical marijuana,” she said. “Before then, we were assuming were going to lose our kids….
“There’s something out there for your child — there’s a cure, and it’s close,” O’Meara said. “Other states are allowing it and it’s working. We really don’t have anything else for our kids.”