4Rocco-Challenge 26

WHO

Rocco is the middle child of 3 of Steph and Jon. I've known Steph for over 12 years, she's a very dear friend. I met Steph whilst working in social care and it's 100% the right sector for her. She's thoughtful and caring, fights for what's right and a passionate advocate for the young people I was working with (and she still is!). As I've come to know Jon over the years I've learnt he's very practical and handy, funny, can deal with any situation thrown his way and a definite family man!

Steph and Jon have built an amazing life for their family (both figuratively and literally with Jon's love of projects) but life threw them a curve ball no one could have predicted.

WHY

Rocco is 7years old and has Lennox-Gastaut, a rare type of intractable* Epilepsy, which is having a massive negative impact on Rocco's quality of life. (*Intractable Epilepsy = can't be completely controlled by medication)

After trying 10 different pharmaceutical NHS supported medications but seeing no significant improvements (or slowing of progression), Steph and Jon (Rocco's parents) got a private prescription for medical cannabis - This has reduced Rocco's seizures and is the first medication where a real positive difference has been seen.

Unfortunately, since the UK made medical cannabis legal over 4 years ago only 3 prescriptions have been given out - that's 3 people in total, across the whole of the UK, in 4 years - just let that sink in.

Getting a private prescription means Rocco's parents have to fund this themselves. Rocco has been on Medical Cannabis since February 2021, at which point it was £800 a month. In August 2022 this increased to £1,900 a month.

Which brings me back to the main goal for my 26 day event, funds for medication - Rocco's life has been significantly improved receiving this medication and his family are doing everything within their power to continue this every month but it's a huge cost and not possible long term.

The hope and aim will always be for the NHS to one day acknowledge the importance of medical cannabis for Rocco and all others depending on it and give Rocco what he needs on an NHS prescription. Until then, please help me do whatever we can for Steph, Jon and their family.

WHAT I'M DOING

Inspired by Epilepsy Awareness Day (26th March), I will be doing 26 challenges - One a day from 1st - 26th March - all related to the number 26. Some physical, some informative and hopefully will get others involved along the way. My final challenge, Sunday 26th March will be walking 26 miles.

I'll provide an update for each challenge as I do them - So watch this space!

WHAT YOU CAN DO

Please consider giving what you can to support me in my challenges and help Rocco get what he needs