Trumbull moms await health committee’s verdict on Bill No. 5450
Expanding the state's medical marijuana program to make the drug available for children has been met with bitter opposition by the Connecticut General Assembly over the last few years.
However, the tide might finally be turning for those who have been advocating for medically fragile children with serious complex health issues who would use an oil form of the drug to treat their life threatening conditions.
After listening to hours of testimony at a public hearing on March 2, the Public Health Committee — one of the joint standing committees of the Connecticut General Assembly — will have a committee meeting Wednesday, March 16, to review Bill No. 5450 which would give children access to medical marijuana.
Trumbull mother Joy O’Meara, whose seven-year-old son Jamison suffers from intractable epilepsy, spoke first at the March 2 hearing and testified that the proposed bill would change, and significantly improve, the quality of life for many children.
Despite failed bills in the past, O’Meara told The Times Tuesday there’s room for optimism this time around.
“From what they told us in Hartford two weeks ago, they said they’d put it through this time,” O’Meara said. “We’re hoping it will get passed but we won’t know until tomorrow…
“Everyone seemed pretty receptive of what we said; they seemed to be supportive of the bill, but we have to wait and see,” she added. “Hopefully what we said will make a difference.”
For one of those speakers, Susan Meehan, formerly of Montville, the support is coming too late.
O’Meara told The Times that Meehan’s daughter, Cyndimae, who attended the hearing in Hartford less than two weeks ago, passed away tragically Sunday at the age of 13.
“It’s so crazy — I was just with her 10 days ago,” O’Meara said. “She kept holding my hand and looking at me. She was the sweetest, bright light and truly an amazing little girl.”
The Trumbull mom said Cyndimae’s funeral will be Thursday afternoon — one day after the general assembly meets.
“Susan is bringing her body up from Maine,” explained O’Meara of her friend’s refugee journey.
In Maine, the medical marijuana program is available as an option for children
“They’re coming back to Connecticut despite what this state has done to her daughter,” O’Meara said. She wants her to be buried back here.”
While she doesn’t know what it’s like to experience Meehan’s agony and loss, O’Meara said she can relate to her friend’s struggle and decision to leave Connecticut.
“It’s been devastating; it’s hard to even put into words,” O’Meara said. “Susan split up her family to fight for her child, and it was working — Cyndimae was showing a lot of improvement with the oil treatment...
“We’re all so heartbroken for Susan,” O’Meara added. “Hopefully this can show the representatives and senators in Hartford that it doesn’t matter how many seizures a child has — it only takes one seizure to take their life.”
She said Tuesday that if the bill fails to get pushed through to the state’s house of representatives Wednesday, she will be out of options.
“If they don’t pass the bill, they’re leaving me without a choice: I have to be totally prepared to take Jamison and move out of Connecticut and become a medical refugee,” O’Meara said.
The other mother
While O’Meara will go back up to Hartford Wednesday to attend the health committee’s meeting and go up to eastern Connecticut to be at Cyndimae’s funeral Thursday, fellow Trumbull mom Ashley Deaso continues to fight an even more pressing battle at Yale-New Haven Hospital
“Ashley’s daughter Regan stopped breathing last Thursday and went into a coma and had to be put on a bypass machine in ICU,” O’Meara told The Times. “She’s breathing on her own now but it got really bad Friday night — it was really terrifying; she thought she was going to lose her for good.”
O’Meara said she wouldn’t know what to do if Regan doesn’t make it out of the hospital.
“I would have lost it if anything happened to Regan,” she said. “Ashley and I have been fighting for this together and seeing her like that really hit home; just like hearing about Susan’s loss hits home to all of us. It makes it that much more real that our children need this medication so bad…
“It’s not just about Jamison,” she added. “It’s about all the children and future generations of children who suffer from epilepsy.”
O’Meara told the general assembly March 2 that Jamison’s seizures have failed to come under control with treatment despite his taking five different medications four times a day through his feeding tube.
“My son has not had seizure control for more than a day in five years,” she testified. “My son misses most of the school year because of this illness.
“I take care of my son and work nights when our nurses come,” she said. “My son is severely delayed due to his seizure disorder.”
Speaking to The Times Tuesday, O’Meara said the experience was “100 times more terrifying than I thought,” but she was glad she spoke about trying to gain access for her son and other children who suffer around the state.
“We should have access to this medication and be able to talk to our doctors about making this decision,” she said. “It needs to be a discussion that’s put in the hands of doctors and parents, not legislators who don’t know what it’s like and who are only rejecting it out of fear.
“It’s not working the way the legislation is set up right now — kids are dying,” she added.
Cyndimae is only the latest example of why the bill shouldn’t be delayed anymore, O’Meara said.
“Hopefully they can see now why we’re fighting so hard for our babies,” she said. “Because kids are losing their lives over this and there’s something out there that can help them.”