How struggling mom won the right to give cannabis to her epileptic son

The brave mom Hannah Deacon has beaten her son Alfie to obtain cannabis oil for medical purposes as a means of treating severe epilepsy.

Without this, seven-year-old Alfie must be filled with so many steroids that his neurologist said that he was at risk of death or that he was severed because of the drugs that made him psychotic.

Hannah took her to the Netherlands for cannabis oil trials and brought conclusive evidence that this could help Alfie – and she finally got permission to use it. , from the Minister of the Interior, Sajid Javid.

As a result, cannabis oil will be prescribed on the NHS as of November 1, 2018.

But Kenilworth's mother believes there is still a lot of work to do to inform doctors about the safety and benefits that come with it – and she speaks at an anti-epileptic demonstration on October 25th.

Today Hannah, who is also a mom for Annie, four years old and married to the landscaper and builder Drew, tells their remarkable story …

"Alfie was eight months old when I heard him scream from his bed and realized that he had had his first catastrophic crisis.

"He started having seizures every half-hour every half-hour for three and a half weeks and ended up in convalescence at Great Ormond Street Hospital because he was very seriously ill and they did not know if it would happen.

"Even though he has had thousands of epileptic seizures since then, I still cry every time I see him because it's appalling to see someone you love having an epileptic fit.

"It turns out that it has a very rare form of pcdh19 epilepsy that affects only nine boys in the world.

"It's a genetic disease, but Drew and I do not have it, it just happened to him and we do not know why.

"It means we do not know his prognosis or how he is likely to progress."

The devastating side of steroids

"The only way that Alfie's seizures could be controlled was intravenously, but this caused serious side effects.

"They made him aggressive and violent, which forced him to hit his sister Annie because he was still as powerful as drugs.

"He was always hungry and his face was swollen.

"We dealt with him until we saw a neurologist, who told us that if we continued like this, Alfie would die or that the drugs would make him psychotic and that he should be severed.

"It was not acceptable.

"I told him that I was looking for the benefits of using cannabis for medical use for nine months and that I had talked to families who had made successful use of it.

"His words were" you do not have a choice, "which means we had to try to do it for Alfie.

"I will always be grateful to him for supporting us in this task."

Cannabis oil trials in Holland

"We moved to Holland in September 2017, while Alfie was five years old.

"Before we left, we had the blessing of Alfie's pediatrician and our local MP because we wanted to do everything openly.

"We realize that some people do not, but we felt that we should not have to break the law to keep our son alive.

"The Dutch doctors began treating it with cannabis oil, which is administered in the form of an oil that is then absorbed into the bloodstream.

"It did not react at first because it takes time for the cannabis oil to accumulate in the body.

"I was extremely worried that this is not happening at work.

"Then, after five weeks of treatment, we were overwhelmed by Alfie's change.

"He stopped having seizures.

"He became happier.

"And his cognitive development began to improve.

"He has delays in learning and speech and has regressed under the effect of his epilepsy and steroids.He only managed to spend three weeks in the hospital. 39; school.

"The cannabis oil was a miracle for Alfie."

Campaigning in the UK

"After five months in Holland, we had all the evidence we needed.

"We came back in February and we obviously had to remove Alfie from the cannabis oil.

"He became very sick again.

"A lot of people got in touch via our Alfie's Hope Facebook page – and those messages kept me going.

"Our MP organized a meeting with the Home Office in March and we sent a petition with 370,000 signatures to Downing Street, where we met with Premier Theresa May

"We told him about Alfie and she said that she would do everything possible to help.

"We were happy."

She added: "But then we had the impression that we were facing a demand for a pharmaceutical trial.We were not a big national pharmaceutical company.We were just a family with a small child who was desperately in need of drugs.

"It became clear in June that we had not succeeded and I did an interview on Radio 4 where I talked about my meeting with Theresa May and how I felt disappointed.

"Shortly after, Secretary of State for the Interior, Sajid Javid, announced that they were granting a license to Alfie and that they were examining cannabis as a medicine.

"We were delighted.

"Our doctor is now free to prescribe this drug to our son without worry about his career nor to any of his colleagues to say that he should not.

"And as soon as Alfie found the cannabis oil in his system, he started doing very well again."

Alfie today

"Alfie is seven now and goes to school every day with individualized support – it's absolutely amazing that he can do it."

"We had tried to help him learn to ride a bike, but he sat down and cycled back, which is sad because every little boy should be able to ride a bike.

"He has now learned to ride a bike, which has been brilliant.

Annie, her sister, is now four years old and has started going to school and her health is no longer relevant to her today.

"Today, Alfie is a cheerful and cheeky boy.

"He loves to ride a bike and tries to make new friends.

"All his cognitive development problems are much easier to solve now that our goal is no longer just to keep him alive."

Why we must educate on cannabis oil for medical purposes

"The cannabis oil will be prescribed from 1 November 2018.

"However, there is still a lot of work to be done for doctors to understand its medical uses.

"I have the feeling that people should have the right to use it, but some doctors do not think this medicine is safe because it has not been tested in the same way as other drugs.

"But it's probably one of the safest drugs you can use.

"We produce cannabinoids in our body and this is what comes closest to our composition (the cannabinoid receptors of the body are part of the endocannabinoid system, involved in physiological processes such as appetite, sensation of pain, mood and memory).

"Cannabis oil can be used for so many diseases.

"Doctors are used to having only one drug for use, but if your body is exhausted in cannabinoids, then cannabis oil can help the body neurologically in conditions like MS. and Parkinson's disease.

"It can also help the autoimmune system and it's great to help relieve pain, especially in cases of arthritis.

"It's good for a lot of different symptoms, so I think it could help a lot of people.

"It makes me very upset because it could be so simple.

"But we're fighting 50 years of people who think cannabis is bad, and we have to talk about it for medical and non-recreational purposes.

"We must be aware of it."

Learn more about Alfie's story and Hannah's campaign here

Action against epilepsy

Hannah will speak at an event called Epilepsy, My Family & Me at the Birmingham REP on Thursday, October 25th.

Epilepsy affects more than 54,000 people in the West Midlands.

The event, organized by Epilepsy Action, will feature expert speakers providing information on the diet and the latest treatments, in addition to an opportunity to meet other relatives affected by the disease and to learn about support groups and services.

Learn more here

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