Charlotte Figi Was a Face of the Medical Marijuana Movement. 5 Years After Her Death, Her Mom Is Still Fighting (Exclusive)

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Young Charlotte Figi captured the attention of the world after high-CBD, low-THC hemp helped tame the seizures that had taken over her life
Charlotte's quality of life was improved by the combination, dubbed Charlotte's Web, but she died in March 2020 from complications of an upper respiratory illness
Charlotte's mother, Paige, opens up for the first time as she tells PEOPLE about grieving Charlotte, caring for her family in the aftermath of the COVID-19 pandemic and moving forward in a way that honors Charlotte's legacyFor 13 years, Paige Figi's primary concern was the wellbeing of her daughter, Charlotte Figi.
Charlotte was born as one-half of a set of twin girls, "healthy and on time," her mom shares.
"Everything was great. Then at 3 months old, she started having a very severe seizure," Paige tells PEOPLE. Seizures would be the primary symptom Charlotte faced in the years that followed, with medical professionals trying different interventions to no avail.
"When it first happens, and something's wrong with your newborn child, it's that tragic, helpless feeling. Charlotte wasn't diagnosed with an actual name for her disorder — which is considered one of the world's worst kinds of epilepsies — until she was about 2½."
Charlotte was diagnosed with Dravet syndrome after "time waiting and very expensive testing." The diagnosis brought forth difficult realities: children with Dravet's typically do not survive into adulthood.
"There was a loss of innocence in finding out there's really nothing we can do. We just tried to enjoy her. The first four years of her life were just a medical tragedy with all of these medications and sadness and intense medical interventions," Paige says.
The family, as well as medical professionals, continued to search for other options. Paige learned about a "high-CBD, low-THC hemp," now called full-spectrum hemp extract, a non-intoxicating plant extract that had shown some promise with seizures.
"It felt like another hopeless situation, like, 'Of course this isn't going to work. She's failed every drug she's had,' " Paige says. "Many of her seizures were longer than 20 minutes. Those first four years, she would stop breathing. Her heart would stop. We had to do life support to CPR while we waited for a doctor, an ambulance. At 4, she was put into hospice — end of life care."
At the same time as she was balancing Charlotte's care, Paige was still raising two other children, Charlotte's twin Chase and oldest child Maxwell. Her then-husband, their father Matt, was overseas in Iraq and Afghanistan.
"We were just always in the hospital. I ... turned the hospital room, the ICU into, like, homeschool. I raised my kids in a hospital and made it fun and made it interesting. We figured out a way to sort of thrive under the situation," she recalls.
Despite everything on her plate, she kept researching possible interventions that could help Charlotte. "I called Israel. I called France and Brazil. I hired translators to see what they were learning from this hemp plant on rodents. It was stopping their seizures. I thought, 'I live in Colorado. Certainly someone must know something about this.' "
"Before kids, I was a rescue diver for the fire department, so I used to dive for dead bodies. I'm a first responder, which is to say I'm good in a crisis. It was very difficult, but I did my best. But when the kids were all asleep, I'd have my moment of, 'This is not a normal family lifestyle,' " Paige recalls.
Living in Colorado gave the family the option to explore the hemp, at the time defined as marijuana and a schedule I substance that couldn't be studied or accessed by a layperson. When she was able to get her hands on it, it changed everything.
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"For Charlotte, we gave it to her, and it worked. Her seizures stopped — her 50 seizures a day, her 50 status seizures a day stopped. So, the first thing that happened was she started breathing room air. We took her off oxygen. She just opened her eyes. Slowly, one thing at a time, just one little life thing at a time started coming back as the seizures stopped," Paige recalls.
"I'm watching this, alone here with three kids, watching this happen like, 'This is insane.' It's kind of mad to see that this worked, that I had to figure this out and that this was efficacious when the stuff we were giving her was not."
It was then that Charlotte's story went public, entering the larger conversation around marijuana. At the same time, she was enjoying her best quality of life she'd had to that point.
"I turned 99% of the media down at the time. They wanted a pot mom story and it wasn't a pot mom story," Paige says. "This is my life. This is my little tragedy. It's my family. This wasn't provocative. I wasn't just giving my dying kid marijuana."
One year later, CNN and Dr. Sanjay Gupta reached out about a documentary.
"I was very uncomfortable looking into his views on this because I had Child Protective Services and law enforcement involved and while I was following the letter of the law, she was the first that had done this," Paige says. They ultimately appeared in his 2013 docuseries, WEED.
As the story got out there, Paige heard from other families who were desperate for options.
"I had no idea how many other people were in the same boat — back against the wall, no pharmaceutical options left," she says. Families desperate for treatment packed up and moved to Colorado.
"You couldn't travel with a schedule I substance over state lines, so I opened my house to them. They lived with me. I gave them 48 hours. I said, 'You have two days, and then another family's going come.' I had a soft landing. A lot of these families came in a medical ambulance type of situation, and they had to stay in Colorado to access this."
Asked how she found it in herself to give when spread so thin, she says, "I think I was just the person in the place at the time. I don't even know how to describe it, but there was no chance that I wouldn't have said yes. It was an honor to be a part of that."
"It was a very interesting time for us all. We created this movement together, and we were cheering each other on," she continues.
In the better years, the family did everything they could to enjoy their time with Charlotte. That continued even after Paige and Matt made the decision to divorce and later, each remarried.
"With the divorce, Matt was in Special Forces. The divorce rate is pretty high there and then with Dravet syndrome, it's even higher. We didn't have a chance. It just breaks you. It breaks you as a human. It breaks your relationship," she says.
"To go through a divorce on top if everything else ... and so many of the families I met had gone through a divorce as well. It's a true test of motherhood, not just raising a sick child, but knowing my healthy children are watching me, they're helping out, they're seeing how to be a human and a mother and how sometimes, you have to just do it and not let it break you. For me, the whole thing made me stronger."
Paige also remembers the period as "ethically and morally, a very heavy time," during which she did enter the advocacy space, going to the federal government to ensure this treatment wasn't lumped in with marijuana and could be legalized for the people who needed it.
"I didn't have any help, no nursing care. And I'd get on a red-eye and fly to their state and help pass the bill, go to the capital and then fly home on a red-eye to feed my family," she recalls. "It was like the essence of community. It was mothers sorting this out for their kids and helping themselves together, and it was really powerful."
"It was very emotional time. My house kind of became this gathering place. These families don't have social life. They don't have a job, they're taken out of productive society to care for a sick loved one. At the same time, how much suffering you can watch a child go through and and not let it break you?"
She continues, "You had to be a resident of the state see multiple doctors, get a marijuana card, and then you couldn't leave the state. And we changed all of that through legislation."
Paige focused on making the most of life with Charlotte while continuing to share the impact of hemp on her life.
"She wasn't sickly. She didn't see herself as a person to be labeled with a medical disease. She was very strong. She was a tough little kid," she says.
That changed in 2020. In February, the whole family was suffering from an upper respiratory illness, unaware of what was around the corner. The rest of them would be on the mend by March, but as the world started learning about COVID-19 and hospital protocols started rapidly changing, Charlotte's condition did not improve.
On April 7, 2020, Charlotte Figi died at the age of 13, of an upper respiratory illness. There was never an official COVID diagnosis.
"She died in the COVID wing of the hospital, with a COVID doctor, in quarantine, but there were no tests. So officially, she died of a respiratory illness, after we were all very sick for a month."
"It was tragic. I lived here, 13 years of her life, knowing she was going to die. You could say nobody was more prepared than I was, but she was so healthy before that, that it was ... that was the tragedy of it," Paige says.
The bereaved mother had not just her own grief to grapple with, but that of the rest of her family.
"Watching them fall in love with her and then watching them watch her suffer ... you want to take that away from the siblings. You want to take that away from Charlotte, but you can't. You had to just kind of dive into the deep and then let them feel these things and let it transform them into good, kind, caring people that always care for others," the mom of three says.
"I think for Chase, losing her twin sister was just absolutely devastating. There's a thing that happens with with twins. The twin loss syndrome is very tough."
The loss was even tougher on the family because lockdown protocols made it so a funeral was impossible.
"We couldn't bury her. We had to have her cremated," Paige says.
Their community rallied around them, organizing 'Rock the Rock,' a concert-like virtual celebration of Charlotte with musicians sending in songs written for her.
As for how this journey has impacted Chase and Maxwell, Paige says the two "became caretakers."
"They became very empathetic and sympathetic people. They were very good with with special needs kids. All of our friends had a sibling with a special needs kids, so they became very caring people in a lot of ways. We've all been through a lot of therapy because they got to see somebody that you care so much about, this big, blue-eyed girl who had a huge personality, and it wasn't pity that we had for her, but it's such a difficult feeling to watch them suffer."
She continues, "It's a difficult sentence to have a special needs or a high-medical person in your family. I think if you're open to understanding it a different way, it can be the greatest thing that can ever happen to you because it changes you. So, I'm hoping that that's what they take from it."
In the years since Charlotte's death, her memory has remained very present with the family.
"My kids, they're 18 and 21 now, so they can do whatever they want, but we still grieve together. We share her. We share stories of her together. We share online on social media with other families. We just share her out loud. And while it's painful to do, I think it's the healthiest way is to grieve together," she says."We do a little bonfire, and that reminds us of the gathering of all of these families in our yard, so we do a lot of bonfires. We trying to do some live music concerts. We always light candles in her name. We remember her constantly. We talk about her constantly."
Paige in particular has also been dedicated to carrying on Charlotte's legacy. She continues to speak on behalf of Charlotte's Web, the high-CBD, low-THC hemp that gave Charlotte relief for so many years and is now named in her memory.
"I still continue my work in Coalition for Access Now to further make sure people have access to this. This isn't going to work for everybody, obviously, but this is very worthwhile and valuable. And I have a deep empathy, a first-hand experience of what it's like to have nothing and no one helping you and that the experts have no idea what to tell you," she says.
"I love what I do. I'm very good at what I do, it's very necessary, and because I've been so consistent, and it's so sensible, it's become apolitical. There's no opposition, it's bipartisan. We're not doing anything outrageous, or on the fringe of what is ethical or moral. This is just like a no-brainer, and so it's been fun to win."
"It's way bigger than kids with epilepsy," she adds. "They're now the smallest population that use this, but the most necessary and urgent still."
There's also Charlotte's Ranch, a ranch Paige purchased in Hahn's Peak, Colo., that she has a special vision for.
"I look at it like her life was shared and so public — that's what I want for this beautiful horse ranch. We have sheep and cattle here, and it's to be shared. The intent is to have an open-door policy. I'm not sure how I'm gonna offer this to people or families or non-profits to come and have respite, a place that they can come to. They're welcome to be here. They can be handicapped, and it can be in wheelchairs, but it'll be accessible and available," she shares.
She's hoping to offer something to other families that she and Charlotte never got to enjoy: a break from their home environment, a getaway that presents minimal medical complications.
"Nothing was ever offered to us. We qualified for Make-a-Wish, but when you get the list of ideas and she's too sick for any of them, there's nothing there. I just want to pay it back a little bit, so they can just have a moment of knowing there's people out there who who are thinking of you and want to do something. I feel very driven to do this for people who've never been offered anything," Paige explains.
With an empty nest and a heart full of love to give — and a mind for change — Paige wants the ranch to be "the essence of Charlotte, very magical."
"These things that carry her name, they represent the life and meaning of this child, and that's very meaningful to me," Paige says.
"I think it's one of the hardest things you can go through is losing a kid. There's not even a name for it. I'm not a widow. I don't know what you call a mother who's lost a daughter, but we need a name for that," she says. "It's the most horrible thing. I can't imagine that there's something more horrible than that."
At the same time, it's been "really incredible" to see how Charlotte's story has impacted the world as we know it.
"To see how impactful one little wide-eyed, innocent kid can be, this special needs kid ... We weren't really welcomed in society. We didn't go anywhere. We didn't take her out to eat because no one wants to see a sick kid in a wheelchair. People are a------- and to think of a kid whose life was meant to be nothing ... I mean, I was told I should put her in an institution and live my life. To see an unsightly special needs epileptic child be celebrated and lifted up and have meaning in someone's life ... I don't even have words for it. It still hits me every day in the work I do," Paige says.
"I think what we've done is probably the most meaningful thing I'll ever do. What we're still doing today is the most meaningful thing I'll ever do in my entire life, and it's an honor to be involved with this," Paige continues.
"It's been fun and frustrating, very gratifying work, but at the end, it's something that I feel driven to do because I know too much. I've seen too much, I know things, and I can't unsee them and unknow them. And so I can't stop until it's complete."
Read the original article on People