A Young Girl Walks Again (Charlotte’s Web)
By: Kim Rosenbaum
Tags: Charlottes Web, Family, Dravet Syndrome, Cbd, Persistence

A true story about a family who exhausted all options to help their daughter battle her disease.

Matt and Paige Figi decided to have another child after their first son turned two. Paige successfully got pregnant, and they soon found out there were two babies. On October 18th, 2006, Matt and Paige had twins, a baby boy, Chase, and a beautiful girl, Charlotte. They were healthy and lively at birth, and the parents were blessed to have two additional members to their family.

Nothing seemed wrong until three months after their births.

The Journey Begins

Matt was putting Charlotte into a new diaper when her eyes began to flicker — it was a seizure. It lasted for about thirty minutes, and in that time Matt and Paige rushed her to the hospital.

There was nothing wrong with Charlotte that the doctors could find through their scans and test, so the family was sent home.

A week later, there was another seizure. Still, nothing was wrong. Over the next few months, Charlotte was having frequent seizures that lasted longer. She had to be hospitalized many times. Again, her tests came back normal.

Paige and Matt were told that these seizures would probably go away on their own despite the severity. They only got worse.

Finally, one doctor that was treating Charlotte thought of three possible diagnoses for the seizures. One of them included Dravet Syndrome.

What is Dravet Syndrome?

Dravet Syndrome is a rare disease found in children and adults. It is caused by a mutation in the SCN1A gene, though not all mutations of this gene will lead to the disorder. Dravet Syndrome causes multiple, prolonged seizures due to several reasons, mainly the mutation of sodium ion channels found in cells. These regulate the movement of sodium ions important for electrical signals among neurons.

Most children who have Dravet Syndrome will experience a seizure at five months that last for more than five minutes. Terrifyingly, most medical tests and scans will come back normal in the first two years. A child’s development will also continue normally until the age of two. Symptoms include low coordination, low muscle tone, decreased mobility, and an array of other disabilities.

This affects 1 in every 15,700 individuals in the U.S.

Standard treatment for Dravet Syndrome includes anti-seizure medication, a ketogenic diet, and nerve stimulators.

The Diagnosis and Treatment

Charlotte wasn’t diagnosed with Dravet Syndrome until she was two and a half years old. For Paige and Matt, it was a slight relief to know what was finally going on with their daughter, but now the harder work began.

Before getting the positive test results for the mutation in the SCN1A gene, Charlotte was already on seven different medications for seizures. They worked for a while, but the seizures would come back even worse than before. Charlotte was also beginning to experience cognitive delays.

Since the medications weren’t working, Paige and Matt felt distressed. They took Charlotte to a Dravet specialist who started her on a ketogenic diet. This diet focuses on individuals eating high amounts of healthy fats and low amounts of carbohydrates. It’s supposed to help the body produce extra ketones which are natural chemicals that help prevent seizures.

To some relief, the diet worked. However, Charlotte went through intense bone loss, her immune system dropped, and even started to have behavioral problems such as eating pinecones from outside.

Then two years later, the seizures came back.

Final Options

By the time Charlotte turned five, the Figi’s went through major drawbacks. Charlotte had lost her ability to walk, talk, and even eat on her own. She was having three hundred grand mal seizures a week. Charlotte’s little heart even stopped a few times, and the doctors recommended putting her into a medically induced coma.

Matt and Paige were at the end of the line. They felt they had exhausted all of their options, and the hospitals couldn’t do anything more.

There was only one more piece of hope left.

Colorado voters approved Amendment 20 to the State Constitution in November of 2000. This allowed the state to have a medicinal marijuana registry program set up. There were eight reasons for which a person could sign up, include seizures.

Despite their previous judgments towards the use of medicinal marijuana, Paige and Matt felt it was necessary to give it a try.

However, it was not an easy process.

Matt and Paige had to find two doctors who would sign off on a medicinal marijuana card. The average patient in the program was forty-two years old. Getting approval for a five-year-old girl was near impossible. People focused on the possible long-term effects smoking marijuana would have on children. When the consequences just seemed out of hand for a child, they turned away the Figi’s.

It was until they reached Dr. Margaret Gedde and Dr. Alan Shackelfold. These two doctors met with the Figi’s and got to know about Charlotte and her disease. When they saw what the family has been through and the current risks Charlotte was subjected to, it was an easy choice for them to sign.

The First Steps

Once the Figi’s were approved, they decided to get marijuana that would be low in THC and high in CBD. THC, or tetrahydrocannabinol, is the psychoactive ingredient found in cannabis. CBD, or cannabidiol, is the component that relieves anxiety, pain, and other health-related problems.

Their first CBD product was bought at a dispensary that was selling cannabis with their requirements. It was called R4, and it cost $800 for two ounces. A friend extracted the oil from the plant, got it tested, and then had Charlotte start with a small dose.

Paige and Matt were terrified at first. They felt as if they were experimenting on their daughter, but had to try for her sake anyway.

After her first dose, the Figi’s did nothing but wait. An hour passed, and there were no seizures. They thought it could have been a fluke and waited a bit longer. To their surprise, Charlotte went seven days without a single seizure.

The Robin Hood of CBD

The Figi’s were relieved to find something that made their daughter’s suffering minimal, almost gone. However, they needed to find a better way to get CBD.

In 2011, Paige Figi found the Stanley Brothers, one of the largest dispensaries in Colorado. The company was run by six brothers who became interested in marijuana when their uncle was diagnosed with cancer in 2008. They were crossbreeding cannabis that was high in CBD and low in THC, but they didn’t know what to do with it.

When Paige reached out to them with Charlotte’s case, they were hesitant due to her youth. It wasn’t until they met her that they changed their minds and wanted to help.

The Stanley Brothers began a nonprofit organization called the Realm of Caring Foundation. They provided cannabis to adults and children for little to nothing.

Charlotte’s Web

A year later on CBD, Charlotte and her family regained their lives. Charlotte was once again active, riding bicycles and walking on her own. She eats normally, and she talks more and more every day. The Figi family has gained a sense of peace and is loving the impact CBD has made.

The Stanley Brothers distributed the same strain of cannabis to Charlotte and many other patients that needed relief for epilepsy and cancer. They decided to name the plant after the young girl: Charlotte’s Web. It is now accessible in many dispensaries and states.

It took a while for everything to fall in place, but Matt and Paige were happy to have their daughter back. They went through every option and fought for many years to save their daughter.

Family never stops looking for a way to help their loved ones. It can take a lot of patience, a lot of trial and error, and even some shifts of perception and previously instilled opinions. The beautiful thing about this story is the persistence of her parents to find a solution.

The only way we truly lose in life is when we decide to give up. As long as we keep pushing through, we all can find our way to make a young girl walk again.