Niemann Pick Diseases is often called the cruel “childhood Alzheimers” and it’s heartbreaking.
Addi and Cassi Hempel are identical twin girls who were born on Jan. 23, 2004 to proud parents Hugh and Chris Hempel. Not long after, the ex-Silicon Valley executives decided to buy land in Reno, Nevada – intending to build a dream house big enough for their family.
When the girls were just 2 years old, they began to get sick with fevers and vomiting, and a pediatrician discovered that their spleens were enlarged. The doctors didn’t know what they had and subsequent tests found nothing. The next year, the girls got another virus and this time their livers were enlarged. Tests, again, revealed nothing specific.
Finally, in October 2007, after a two-year medical odyssey, Addi and Cassi were diagnosed with an ultra rare and fatal cholesterol disease called Niemann Pick Type C (NPC) that affects only 500 people worldwide each year. It is a genetic disease where cholesterol is not metabolized properly in cells and excess cholesterol begins to accumulate in different organs including the liver, spleen, lungs, and even the brain. NPC also causes progressive neurological deterioration with symptoms including dementia and intractable seizures.
According to the National Neimann Pick Disease Foundation:
“Symptoms may appear as early as a few months of age or as late as adulthood. Vertical gaze palsy (the inability to move the eyes up and down), enlarged liver, enlarged spleen, or jaundice in young children are strong indications that NPC should be considered. It is common for only one or two symptoms to appear in the early stages of the disease.
In most cases, neurological symptoms begin appearing between the ages of 4 and 10. Generally, the later neurological symptoms begin, the slower the progression of the disease. NPC has been initially diagnosed as a learning disability, mild retardation, “clumsiness,” and delayed development of fine motor skills. It is common for a family to spend several years seeking a diagnosis before NPC is identified.
NPC is always fatal. The majority of children with NPC die before age 20 (many die before the age of 10). Late onset of symptoms can lead to longer life spans but it is extremely rare for any person with NPC to reach age 40.”
To help slow the progression of the neurodegeneration caused by NPC, Hugh and Chris were granted special permission from the U.S. Food and Drug Administration (FDA) to administer intravenous infusions of an experimental non-toxic sugar compound called 2-hydroxypropyl-β-cyclodextrin into their bloodstreams. They later even got permission to give the girls painful lumbar punctures to get the experimental treatment into their brains directly.
However, on top of the other debilitating symptoms caused by NPC, Addi and Cassi also suffered from up to 100 seizures a week. In an effort to bring the intractable seizures under control, Hugh and Chris became interested in cannabidiol or CBD.
CBD for Seizures and Cancer
CBD is one of at least 80 different cannabinoids found in the cannabis sativa plant. The compound is non-psychoactive compared to THC and has been shown to be remarkably effective in treating epileptic seizures along with a host of other conditions.
By age 5, the twins could no longer walk or talk, they were suffering many seizures a day, and they were on a number of potent pharmaceutical medicines that were meant to control the seizures but had a myriad of side effects. Although some medications were more effective than others, all of them were essentially meant to take away the stresses or triggers that caused their seizures which essentially made the girls into living zombies.
With their children deteriorating in response to the drugs, Hugh and his wife Chris began conducting extensive research and came across the human endocannabinoid system. They discovered that it was heavily involved with regulating many functions in the body, including helping to control brain and nerve activity (memory and pain), energy metabolism, heart function, and the immune system.
Their research also pointed to CBD as a potential treatment for seizures. After confirming its safety profile, they were convinced that CBD could help their twins and set out to find a supply of CBD oil in the State of Nevada. The problem was, even though medical cannabis had been legalized in the state for almost a decade, CBD extracts were nowhere to be found.
So, Hugh and Chris courageously set out to do it themselves. They first obtained physician approval to pursue the cannabis treatment for Addi and Cassi. Then they became licensed caregivers in the State of Nevada so they could cultivate and make extractions of CBD oils from strains of the cannabis plant that had high CBD content.
The girls have been receiving daily CBD oil treatments ever since and the results have been exceptional.
Unfortunately, even though the CBD has been extremely effective in reducing the number and severity of the seizures, it hasn’t completely stopped the episodes from occurring. The girls still require a small amount of pharmaceutical drugs to help with the seizures but the quantities and dosages have been significantly reduced.
More importantly, not only are the girls having less seizures and shorter seizures, they’re also bright-eyed happy children once again. They are no longer the heavily drugged-up zombies that they used to be under the seizure medications.
Parents as Advocates for CBD and Cannabis
Like other parents who have gone through similar experiences with CBD, Hugh and Chris have become advocates for medical cannabis. They now are licensed to grow, extract, and dispense cannabis in Nevada to medical patients in need of treatment. They’ve also joined other advocates to form a non-profit organization to fund clinical research in the private sector.
The couple are also actively lobbying the government to end federal cannabis prohibition and remove cannabis from the Schedule 1 classification under the Controlled Substances Act. They argue that until cannabis is reclassified, the unnecessary legal red tape will continue to prevent researchers from conducting proper clinical research on the plant’s medicinal value.
Hugh and Chris are confident that medicinal cannabis has the potential to become the biggest healthcare success story of our lifetime… but only if we engage in learning the truth and ask our federal government to end prohibition of cannabis.
We couldn’t agree more.
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