Jorja's Story
Determination, perseverance and sheer will to succeed.
Jorja Emerson was born with an extremely rare chromosome abnormality called a 1q43q44 deletion.
This condition has debilitating side effects, which include a very aggressive form of Epilepsy that results in multiple life-threatening seizures and is highly challenging in the field of medicine. In the early stages Jorja was incorrectly diagnosed with a degenerative brain disease and her family were told that she would not survive and there was nothing more that could be done for her yet 4 years after the correct diagnosis, Jorja is well & thriving.
Eventually her condition was correctly diagnosed as intractable epilepsy but this disorder cannot currently be controlled with medication.
This incredible story is down to Jorja's determination coupled with the unlimited love and perseverance of her family, in particular her father, Robin’s sheer will and endeavour to look beyond the devastating advice of the experts and continue to search for solutions to save and maintain Jorja's life! This led to the discovery of the unique benefits of Cannabis, one of our most ancient medicinal plants to give Jorja a quality of life that was previously unattainable, as most experts advised, impossible!
Until October 2018 it was illegal for children in the UK to be prescribed Medical Cannabis and our influence helped to push for a change in UK legislation. When the law was changed the treatment for Jorja Emerson commenced almost immediately and she became one of the first children in the UK to be prescribed Medical Cannabis under this new Act of Parliament.
The Jorja Emerson centre will become Jorjas legacy by pioneering the rapid advancement of research, treatments and medicines related to her condition and many others embodied in her name for generations to come. Treatments and medical trials will be based at our state of the art clinic facility in Paddington, London which is just a 3 minute walk from Paddington station.