Hayley Rose is a young Vancouverite who was diagnosed with a severe form of Epilepsy called Lennox-Gastaut Syndrome in 1999 (at the age of 6). LGS is a rare disease characterized by multiple types of seizures (8 in total) which she was experiencing constantly, even in her sleep.
Rigid limbs shaking violently, hands bent inward with fingers clenched so tightly they cut the her palms, lips turn blue, purple face, eyes rolled back into her head, locked jaw with tongue protruding, bloody foam coming from her blue lips, each breath a gasping yelp. Over a decade, doctors tried many drugs designed to alleviate seizures. Some work for a while and then just stop working, others don't work at all or cause intolerable side effects. Some exacerbated her conditions and actually caused more seizures. They experimented with Ketogenic and MAD diets and exhausted every pharmacological option over many years before conceding there was nothing else conventional medicine could do for her.
Cheryl spent years contacting specialists around the world, faxing Hayley's medical reports all over Canada, the US, England even as far as India. But none of these doctors had anything new to offer.
Countless hours of online research into LGS resulted in Cheryl finding documentation of the seizure reducing properties of Cannabis. But there was not enough evidence for Canadian doctors to even consider it as legitimate medication and no one was willing to sign the reams of paperwork that were required by Health Canada for a medical exemption.
Cheryl read everything she could find on the topic as she witnessed her child continuing to deteriorate. In desperation, she decided to travel with Hayley and her younger brother down to California, where medicinal Cannabis culture was more advanced and doctors were more accepting of its use, hoping to find a doctor who would let Hayley try it. But she was unable to find anyone willing to prescribe Cannabis to an eight year old. She returned to Vancouver totally devastated, overwhelmed by the fact that medical science had nothing more to offer and the only potential solution was not only out of her reach, it was illegal. But she was encouraged by friends to contact a man named Marc Emery. Marc is one of our country's most notable advocates of international Cannabis policy reform.
Marc taught them about the safe use of Cannabis and showed them a device that produced a cool vapour rather than the hot smoke that burning produces. He introduced Cheryl to other medical users so she could hear their stories and gave Hayley the opportunity to try it. Cheryl will never forget the moment Hayley slowly inhaled a thick steam of soothing smoke because a paralyzing fear of breaking the law and risking prosecution for giving her child this medicine swept over her. She understood the legal consequences of what she was doing but felt deep down that it was the right thing – the only thing – that she could do for her child.
As Hayley exhaled the vapor she immediately began speaking clearer and looking more alert. Over the next hour Cheryl witnessed a miraculous improvement in her cognitive abilities. Her eyes became clearer, her balance improved and Cheryl watched her daughter come 'back to life' before her eyes! That night Hayley had two seizures, compared to nine the night before and the following night she was seizure free which was very rare. Cannabis was the first medicine to relieve that torment and offer her a full night of uninterrupted sleep. Cheryl couldn't help but think of the years that were lost because she was unwilling to break the law and unable to find a doctor willing to take the risk of helping them. But nine days later, Dr. Marvin Lemke was so moved by the improvement he saw in her, he immediately agreed to sign Hayley's MMAR paperwork.
Soon after Cheryl was contacted by Michelle Rainey who had heard about Hayley and wanted to tell her about a doctor she thought could help with Hayley's medicine. Dr. Paul Hornby spent much of his career researching the medicinal properties of Cannabis and after meeting Hayley, he was immediately interested in helping to find the right strain for her. With his help and hard work they found a special strain, unusually high in Cannabidiolic Acid that controlled seizures in a way no pharmaceutical was capable of. Reproduced asexually, it is possible to maintain the CBD level consistently from crop to crop. Unfortunately, strains high in CBD are scarce since commercial breeding has concentrated on strains high in THC but very little CBD.
Dr. Hornby named the strain “Hayley's Comet”. It's unique profile contains large concentrations of CBD-A, which has been found to be useful in treating not only seizure disorders but also pain and inflammation. More people die each year from using simple pain relievers than all illegal drugs combined. “Before this medicine I barely lived at all. Now I'm healthy and I feel strong and alive. I feel like it was the beginning of life for me and I want others to get the opportunity to have that new beginning as well” Hayley Jade Rose
There are many strains of Cannabis being successfully used to relieve symptoms pharmaceuticals have failed to. Unfortunately not enough is known about them. But through the work of Dr. Hornby and scientists like him, there is hope that the science of Cannabis will be accepted by the mainstream and end the stigma of it being an addictive Narcotic. “For the last 8 years, we have remarkably reduced seizure activity as per reports from BC Children's Hospital. To date we are currently helping children across Canada and we are now looking to expand internationally”.
The Hayley Rose Foundation was created (registered: 2014) to do exactly that. The Foundation will direct the scientific research and education programs and conduct trials for these ground-breaking strains.
Hayley Rose Foundation Objectives
1. To relieve poverty by providing support and care to children afflicted with epilepsy and their families who are poor, of low income, or in need.
2. To advance education by developing and providing information and training for families with children afflicted by epilepsy.
3. To promote health by providing children with epilepsy and their families with access to related outreach, counseling, information, or group support programs.
4. To advance education by providing awards for research into the management of epilepsy in children.
5. To promote health by providing health care services or products that prevent and manage serious threats to health and survival of children with epilepsy.
6. To receive and maintain a fund or funds and to apply all of part of the principal and income therefrom, from time to time, to qualified donees as defined in subsection 149.1(1) of the Income Tax Act (Canada).
What We Do
In order to help relieve the tight budget and added undue stress along with additional potential health issues a child afflicted with epilepsy and their family can endure we provide support with access to information on possible tax credits as well as to apply all or part of the principal and income therefrom, from time to time, to qualified donees as defined in subsection 149.1(1) of the Income Tax Act (Canada).
By providing education through the development of information, training, and protocols for children afflicted with epilepsy and their families; their families, doctors, hospitals, schools, care residence, healthcare personnel and support services can better optimize their child/patient/student/residents health.
2008 Oct Hayleys Comet Cannabis Capsules. Vancouver Public School Board
2011 Jan Iolite vaporizer. Vancouver Public School Board
2014 April inhaled and cannabis capsules, oil, tinctures. Vancouver Coastal Health, CLBC, John Howard Society Residential Care.
2015 February 25th- - March 5th Hayley Rose Foundation Implementation of cannabis capsules into VGH Pharmacy for administration of medication for Hayley Rose by VGH nursing staff. (policies and procedures for VGH and pharmacy are currently being reviewed so proper amendments can be made for future patients.)
In order to promote health we provide outreach and information for families and their doctors through databases created to help families find tested standardized medicine in their province or delivery to...
Children's hospitals though out Canada
Child neurologists by province in Canada
Epilepsy clinics (child and adult) in Canada
Adult hospitals with epilepsy clinics
Adult neurologists in Canada
Epilepsy societies in Canada
Resources for children with epilepsy (paws for cause, make a wish ect.)
Up coming epilepsy events and fundraisers in their province.
This will expand to different countries as we grow. All of which will be found on our website, in office, by request or downloaded.
To promote health by providing services or products that prevent and manage serious threats and survival of children with epilepsy.
Another part of this objective is a more open neurology component, as many areas and behaviors are similar or in the same regions resulting in similar symptoms, such as autism, OCD, ADHD, anxiety, PTSD, as well as many other neurological conditions. In order to better understand the epileptic brain we must study the whole brain and other conditions that present in similar fashions.
To advance education by providing awards for research into the management of epilepsy in children
By providing awards for research into the management of epilepsy, grants and scholarships.
To relieve poverty by providing support and care to children afflicted with epilepsy and their families who are poor, of low income, or in need
By following all our objectives we are able to help relieve poverty by providing support and case to children afflicted with epilepsy and their families who are poor. Of low income, or in need.
We will hold education and training lectures that will allow patients, caregivers, and health care providers information on the latest research in order to better assist the patients in managing their health.
For more information please email or contact us at: Hayley Rose Foundation - Cheryl Rose: 1-604-500-6436