'My epileptic daughter faces excruciating pain unless Sajid Javid changes the law now'

Three years ago, the then-Home Secretary Sajid Javid took steps that saved my daughter's life. Now I need his help again.

My daughter, Jorja, was born with a severe form of epilepsy, which left her suffering more than 30 seizures a day. She was in and out of hospital almost weekly. She was admitted to intensive care twice, and the second time we were told it was terminal. We tried every treatment available. None made any difference. Every day, I feared for her life.

As a father yourself, faced with a similar situation, you would take whatever steps you could to save your child. So, when another parent told me of a treatment that had helped their child with a similar condition, I was desperate to find out more. But that treatment – a form of medical cannabis – was not available in the UK.

Jorja Emerson in intensive care as a baby (Robin Emerson)

That was when the Home Secretary stepped in and used his power to change the law. That gave Jorja - and around a dozen other children – access to legal but unlicenced treatment.

The impact was instant. The seizures stopped almost completely. She took her first steps. She uttered her first words. She smiled for the first time. I began to have hope for my daughter for the first time.

But now, three years on, her life is once again at risk. Clinical guidance says that only specialist consultants are allowed to prescribe medicinal cannabis in the first instance. That was fine as we found a consultant willing to prescribe for a small group of children like Jorja.

Jorja's treatment allows her to live without pain - but she faces an uncertain future unless the government intervenes to change the law (Robin Emerson)

But our consultant retired a few weeks ago and we cannot find anyone else willing to prescribe. This week, MPs are due to discuss this in the House of Commons. I hope he will listen to their pleas to step in to enable Jorja - and the other children affected - to continue to receive this life saving treatment. All we need is for GPs to be allowed to prescribe this too.

When Sajid changed the law three years ago, he said: "There is nothing harder than seeing your loved ones in pain." Without her treatment, my daughter faces a return to the pain of the past.

He has it in his hands to stop that from happening.