“Transforming Desperation into Drive: One Mother’s Fight for Her Daughter’s Rights”

Charlotte, born in 1988, faced a challenging start to life with a traumatic birth resulting in severe learning difficulties. Despite these hurdles, she thrived in her childhood until experiencing seizures at age 16, potentially triggered by puberty or injuries sustained from falls. Initially resembling panic attacks, her seizures progressed in frequency and intensity, occurring every 3-6 days. These seizures, often exacerbated by illness or fatigue, leave her distressed and incapacitated for up to a week, hindering her attendance at day care.

Compounded by her tracheostomy tube and lack of voice box, monitoring Charlotte’s seizures requires constant vigilance, disrupting my sleep and impacting my ability to work and maintain a social life. 

Seizure episodes are marked by rigidity, shaking, and loss of consciousness, sometimes lasting for hours. Charlotte has tried various anti-convulsant medications, each with debilitating side effects and limited efficacy. Notably, Keppra caused severe agitation and near-fatal incidents, underscoring the dire need for alternative treatments.

In pursuit of relief, Charlotte’s family turned to CBD oil, initially inspired by the success stories of others. While CBD oil offered some respite, it was short lived.

 However, access to perscription cannabis, particularly Epidiolex through the NHS, has provided significant relief, reducing seizures and improving recovery without the prohibitive cost.

Despite these strides and seizure control, Charlotte’s quality of life sadly continues to decline, necessitating extensive care and modifications to her home. Her situation underscores the urgent need for accessible, effective treatments like prescription cannabis, which not only alleviate suffering but also alleviate the burden on healthcare systems in the long term. 

To broaden NHS access, it’s crucial to conduct clinical trials with cannabis not only in epilepsy but across a wider spectrum of conditions.

Cheryl Keen.

Charlie’s mummy x

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