We urge the government to make medicinal cannabis legally available on the NHS to help our daughter and improve her quality of life and all others whose lives could be helped by legally accessing CBD oil.
CBD oil is currently available to buy in the UK but to do so would be without medical guidance and supervision. Social care and respite providers currently legislate against the use of CBD oil.
Other countries worldwide have legalised medical cannabis for cases such as Bláthnaid and it has been proven to help control seizures. As parents we only want to do what we believe is best for our child and to work alongside with medical and health care professionals to provide Bláthnaid with the best care.
Why is this important?
Our 10 month old daughter has been diagnosed with Aicardi syndrome, a rare genetic malformation estimated to affect only 4000 worldwide. Aicardi Syndrome symptoms include seizures beginning in infancy in the form of infantile spasms which progress to recurrent seizures (epilepsy) that can be difficult to treat.
Bláthnaid has multiple seizures day and night as many as thirty a day which cause her severe distress and she screams and cries tears throughout the seizures.
She is now classed as “drug resistant” as we have tried her on a number of different epilepsy medications none of which have helped her seizures and have only resulted in side effects of the medication including sedation and irritability.
We as parents can not sit back any longer and watch our daughter suffer knowing there is something proven that can help her seizures.
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