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| Charlotte |
Doctors told Paige and Matt Figi that their daughter, Charlotte, would not survive much longer after she was diagnosed with a rare form of epilepsy- Dravet syndrome.
But after years of researching possible cures, her desperate parents have resorted to feeding her marijuana - after stumbling across the controversial treatment online.
And incredibly, after just a few months, Charlotte has finally begun to walk and talk for the first time - to the amazement of doctors - and her seizures have almost completely stopped.
Mrs Figi said: ‘We tried everything possible, and doctors kept telling us she was going to die.
‘When Matt first told me about the treatment I was horrified - I didn't want my daughter to get high.
‘But we were desperate and Matt practically begged me to try it. We had tried everything else and nothing was able to help our daughter.
‘But after just one treatment, we were astounded - I couldn't believe the effect it had on Charlotte.
‘She's like a totally different girl. We never thought that marijuana would help us give our daughter a chance at life.’
6-year-old Charlotte had her 1st seizures when she was just 3-months-old, she had a normal birth and has a twin sister.
Within a week, she had started to suffer from violent seizures several times a day.
She was eventually diagnosed with Dravet syndrome - a rare and catastrophic form of epilepsy that begins in infancy.
Children with the condition tend to develop normally as babies but progress starts to plateau in the 2nd year of life.
Sufferers face a higher incidence of sudden unexplained death in epilepsy patients (SUDEP).
They often also experience other conditions including developmental delays, sleeping difficulties, chronic infections and difficulty feeding.
There is currently no cure and treatment options are limited - they mainly involve using anti-epilepsy drugs to treat the seizures.
Little is known about the long term prognosis of people with Dravet syndrome.
Mrs Figi, from Denver, Colorado, said: ‘We tried every medication possible to help stop the seizures and Charlotte was having thousands of small seizures a day.
‘Matt was serving in the U.S. Army in Afghanistan, so I was struggling to look after our children alone.
‘By the age of 5, Charlotte was having a 300 seizures a week and had lost the ability to walk, talk and eat.
‘Matt was back and forth from Afghanistan throughout Charlotte's life, he had to eventually leave the military because he couldn't keep flying back during missions and training.
‘The doctors told us to prepare for her death - they told us that she wouldn't pull through.’
At this point, Mr Figi stumbled across an article online that claimed a child with the same condition as Charlotte had been treated effectively with cannabis.
Mrs Figi said: ‘We were so desperate, Matt had heard of another child with the same condition who had used cannabis to help dramatically reduce the child's seizures.
‘When we first gave her the cannabis oil she went from having hundreds of seizures a day to none.
‘She went for 7 days without a twitch. It was unbelievable.
‘She now only has a few seizures a week.
The oil is extracted from the cannabis leaf using alcohol. This is then diluted to a precise dosage.
‘Charlotte receives cannabis oil under her tongue, twice a day. The exact dosage is carefully measured and strictly controlled.’
Mrs Figi has been in contact with the Stanley brothers who run a non-profit organisation, called the Realm of Caring Foundation, which provides cannabis to adults and children suffering from epilepsy, cancer, multiple sclerosis and Parkinson's, who cannot afford it.
The 6 brothers have been working for years cross-breeding a strain of marijuana that has medicinal properties but does not trigger psychoactivity or induce a 'high'.
According to CNN, the strain is low in tetrahydrocannabinol, or THC, the compound in marijuana that is s psychoactive.
It is also high in cannabidiol, or CBD, which has medicinal properties but no psychoactivity. Scientists think the CBD quiets the excessive electrical and chemical activity in the brain that causes seizures.
Mrs Figi recalls: ‘Joe and his family were really nervous and apprehensive to treat Charlotte as she was the youngest patient they had ever had.
‘I had to assure them that it would be okay and that I had already had to sign a do not resuscitate order.
‘After a month of success they changed the name of the strain to Charlotte's Web, which I think is a great name for it.
‘The Stanley brothers do it for very little money and sell the cannabis for pennies.’
Parents all over the U.S. have been inundating Mrs Figi with phone calls and emails expressing their hope for a possible remedy to the syndrome.
She said: ‘Over 200 paediatric patients will be trying Charlotte's Web in the next few weeks, we expect there will be thousands soon.
‘I don't have a political agenda, I just want parents to be able to treat and help their children.
‘Parents need access to this medicine as soon as possible.’
Medical marijuana is currently legal in 20 U.S. states
Source Link: We feed our daughter CANNABIS to stop her thousands of seizures each week
Related Link: Dr. Sanjay Gupta (CNN) Changes His Mind on Marijuana
6-year-old Charlotte had her 1st seizures when she was just 3-months-old, she had a normal birth and has a twin sister.
Within a week, she had started to suffer from violent seizures several times a day.
She was eventually diagnosed with Dravet syndrome - a rare and catastrophic form of epilepsy that begins in infancy.
Children with the condition tend to develop normally as babies but progress starts to plateau in the 2nd year of life.
Sufferers face a higher incidence of sudden unexplained death in epilepsy patients (SUDEP).
They often also experience other conditions including developmental delays, sleeping difficulties, chronic infections and difficulty feeding.
There is currently no cure and treatment options are limited - they mainly involve using anti-epilepsy drugs to treat the seizures.
Little is known about the long term prognosis of people with Dravet syndrome.
Mrs Figi, from Denver, Colorado, said: ‘We tried every medication possible to help stop the seizures and Charlotte was having thousands of small seizures a day.
‘Matt was serving in the U.S. Army in Afghanistan, so I was struggling to look after our children alone.
‘By the age of 5, Charlotte was having a 300 seizures a week and had lost the ability to walk, talk and eat.
‘Matt was back and forth from Afghanistan throughout Charlotte's life, he had to eventually leave the military because he couldn't keep flying back during missions and training.
‘The doctors told us to prepare for her death - they told us that she wouldn't pull through.’
At this point, Mr Figi stumbled across an article online that claimed a child with the same condition as Charlotte had been treated effectively with cannabis.
Mrs Figi said: ‘We were so desperate, Matt had heard of another child with the same condition who had used cannabis to help dramatically reduce the child's seizures.
‘When we first gave her the cannabis oil she went from having hundreds of seizures a day to none.
‘She went for 7 days without a twitch. It was unbelievable.
‘She now only has a few seizures a week.
The oil is extracted from the cannabis leaf using alcohol. This is then diluted to a precise dosage.
‘Charlotte receives cannabis oil under her tongue, twice a day. The exact dosage is carefully measured and strictly controlled.’
Mrs Figi has been in contact with the Stanley brothers who run a non-profit organisation, called the Realm of Caring Foundation, which provides cannabis to adults and children suffering from epilepsy, cancer, multiple sclerosis and Parkinson's, who cannot afford it.
The 6 brothers have been working for years cross-breeding a strain of marijuana that has medicinal properties but does not trigger psychoactivity or induce a 'high'.
According to CNN, the strain is low in tetrahydrocannabinol, or THC, the compound in marijuana that is s psychoactive.
It is also high in cannabidiol, or CBD, which has medicinal properties but no psychoactivity. Scientists think the CBD quiets the excessive electrical and chemical activity in the brain that causes seizures.
Mrs Figi recalls: ‘Joe and his family were really nervous and apprehensive to treat Charlotte as she was the youngest patient they had ever had.
‘I had to assure them that it would be okay and that I had already had to sign a do not resuscitate order.
‘After a month of success they changed the name of the strain to Charlotte's Web, which I think is a great name for it.
‘The Stanley brothers do it for very little money and sell the cannabis for pennies.’
Parents all over the U.S. have been inundating Mrs Figi with phone calls and emails expressing their hope for a possible remedy to the syndrome.
She said: ‘Over 200 paediatric patients will be trying Charlotte's Web in the next few weeks, we expect there will be thousands soon.
‘I don't have a political agenda, I just want parents to be able to treat and help their children.
‘Parents need access to this medicine as soon as possible.’
Medical marijuana is currently legal in 20 U.S. states
Source Link: We feed our daughter CANNABIS to stop her thousands of seizures each week
Related Link: Dr. Sanjay Gupta (CNN) Changes His Mind on Marijuana
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