Joanne and Ben’s Story

Published: December 07 2023
Last updated: December 07 2023

Joanne Griffiths, 48, has been given an Epilepsy Star award for her campaigning work and for being an incredible source of support to her son Ben, 14, who has severe epilepsy. Joanne was nominated for the award by her husband and mum, who wanted to show their thanks, and for Joanne to be recognised for all she does for the family and other children with uncontrolled seizures. 

Joanne’s husband, Paul, and mum, Gillian, nominated her for the award. Paul said:

“I nominated Joanne for an Epilepsy Star award because I wanted to publicly thank her for all she’s done. Without her, Ben probably wouldn’t still be alive. I owe her a huge debt of gratitude for all her hard work and research, and for making sure Ben has the medication he desperately needs to stay alive, something I couldn’t do.”

Joanne shares her story.

“Ben was diagnosed with epilepsy at six months old due to brain damage at birth. He had been experiencing seizures since he was born but we didn’t know they were seizures until we saw a neurologist.

Joanne and Ben taking a selfie together outside
"Ben tried multiple medicines in various combinations as well as the ketogenic diet, and was evaluated twice for possible surgical treatments. But his seizures remained severely uncontrolled."
Joanne and Ben standing next to a festive looking tree.

“On a good day, Ben would have 80 seizures a day. And at its worst, the seizures would be continuous, going well into the hundreds. Often Ben would need ambulances for seizures or the injuries that resulted from the seizures. He had no quality of life.

“In 2014, we learnt about cannabis oil and I looked into how it could be used for epilepsy. We were able to buy CBD oils alone which helped Ben’s cerebral palsy and mobility, but it did not help to control his seizures. Then in early 2018, we had the opportunity to try a whole-plant medical grade cannabis product from Canada. Ben’s seizures reduced to just six a day. He was brighter and started to enjoy life; he was swimming and playing in water, riding his bike, and riding all the fast rollercoasters at theme parks.

“It has been awful to watch our child suffer on a daily basis for his entire life and the impact has been felt by our other children who often miss out on doing things other children and families do. They have seen injuries and suffering but we are so proud of the love, understanding and support they give to Ben. He’s very much included and loved.

“Fighting for a medically complex child is so hard in the UK – you have to fight for every need. It feels like every need Ben has is a challenge and a battle, but the biggest battle has been the fight for medicinal cannabis. First, the fight was for it to be legal to prescribe cannabis for epilepsy. Then, we had to find a UK prescribing doctor, navigate the complexities of government and NHS stakeholders, Brexit threatening our son’s medication supply, amongst other things.

“All of this has taken us out of our comfort zone, but we’ve continued the fight. I joined the End Our Pain campaign group and we fought for five years to improve access to medicinal cannabis. The campaigning has taken up lots of our precious time and we’ve missed out on a lot of occasions we can never get back. The sad thing is that even though the law around medicinal cannabis changed in 2018, so few epilepsy patients have successfully gained funded access.

“Through doing the campaigning and volunteer work, I witnessed children running out of medication due to financial constraints. In some cases, families had to fund up to £2,000 a month.

Joanne and Ben hugging and smiling.
"Along with other parents, I co-founded Intractable, which gained full charitable status in June 2022. Intractable is the first fully registered charity to fund medicinal cannabis prescriptions to children and young adults when the medicine has been prescribed by a specialist doctor."

“Seeing the huge improvement the full extract cannabis has had on our son, and the positive impact on us as a family has motivated us. The impact of seizures can be debilitating and the whole family must try and find a way to cope. It has an impact on mental health too and some just find it too much. Finding the right treatment can repair some of the damage by giving children and young adults their lives back.

I feel deeply honoured and grateful to be recognised as an Epilepsy Star winner this month. The support from my family who nominated me means the world to me.”

Paul added, “Joanne is an amazing woman who not only devotes her life to her own children, but also to all the children and adults who need a voice to help obtain medical cannabis NHS prescriptions. She is immensely driven and never asks for anything in return.

“In essence, I want her to know that everything she does is appreciated and I’m so proud of her. She fills all our lives with love and hope for the future. I’m honoured to be her husband.”