According to a recent article, the parents of a boy with epilepsy were told they would need to prepare for him to have end-of-life care after they were unable to afford his medicinal cannabis.
Lennox–Gastaut syndrome (LGS) is a rare and severe form of epilepsy which begins in childhood. Children with LGS have frequent and many different types of seizures. LGS is responsible for estimated five percent of childhood epilepsy and appears usually between the ages of 2 and 6.
Symptoms:
The most prevalent symptom of LGS is severe and frequent seizures. Three types of seizures experienced include:
- Atonic seizures, which are characterized by sudden loss of muscle tone causing the individual to collapse
- Tonic seizures, which cause muscle stiffening and are most common when the individual is asleep
- Absence seizures, which are prolonged episodes of seizure activity when the individual blankly stares, blinks rapidly, and nods head
Other symptoms related to LGS and frequent seizure activity include:
- Learning and developmental delays
- Injuries from falls
- Behavioral problems which at times can develop into psychotic episodes
Treatments:
- Medications to treat the severity and frequency of seizure activity. Many times, multiple medications are needed to have an effect
- Special diets such as high fat, low carbohydrate diet
- Surgery to place a nerve stimulator which sends electric impulses to the vagus nerve
- In the most severe cases, corpus callosotomy surgery can be performed. This procedure separates the right and left sides of the brain to stop the seizure activity from passing from one side of the brain to the other
It’s important to talk with your doctor about the risks and benefits of each treatment option. In more severe cases, emergency medical care is necessary, because LGS can be fatal if it goes without treatment.
Bailey Williams’ Story
Bailey Williams is a 20-year-old boy diagnosed with the rare and severe form of epilepsy called Lennox-Gastaut Syndrome. In addition, he has learning difficulties. His parents, Rachel Rankmore and Craig Williams, have dedicated their life to caring for their son, including covering the costs of his life-saving medications. After trying out about 20 other drugs, they found that the one medication that Bailey Williams needs to survive is medicinal cannabis. However, the COVID-19 pandemic and the price of the medication have caused the family to be in an unfortunate situation.
Bailey Williams’ medicinal cannabis costs about 1,200 euros, which equates to about 1,225 dollars. This price, which was already a significant amount to shell out, was only emphasized by the family’s financial struggles due to the pandemic. They made efforts to raise money for his medication by reaching out on social media and arranging lotteries and golf days. Despite their efforts, they still had to reduce the amount of medication their son was taking since they simply did not have the funds for it.
His mother, Rachel Rankmore, decided to reach out to doctors and hospitals, asking them what they could do if this treatment was no longer an option. Their response was that Bailey would be put into palliative care. Rankmore was left shocked at this news that there were no other options for her son if she could not provide him with his medicinal cannabis.
The news struck the family hard, and they have struggled to understand how medical professionals have decided their son’s only other option is to be put in end-of-life care. They say their son is full of life and has numerous aspirations they hope to help him achieve. But if their money runs out, they will be left without any chance for their son.
More Road Blocks
Now, the NHS has announced it is putting a complete block on prescribing medical cannabis, meaning many other children diagnosed with epilepsy will struggle to get their medication. The decision is due in part to the up-front prescription cost that the NHS would be faced with. Even though there are NHS consultants who want to prescribe medicinal cannabis, they are being blocked by lack of funding. The Department of Health and Social Care have stated they will continue to work with researchers to create clinical trials that will test the safety and efficacy of more cannabis-based medicinal products to inform future NHS funding decisions.
