Emma & Teagan
Teagan is 13 years old and has a chromosome disorder called Idic15
This is where her epilepsy comes from. Teagan can seizure up to 300 times per day. In 2018 she spent 2.5 months in intensive care fighting for her life. We didn’t think she was going to come home. Then, we managed to get medical cannabis (Epydiolex – a pure CBD isolate) for her. Within 2 weeks we were out of hospital with her seizures massively reduced. Unfortunately this medication only helped for a few weeks.
In 2019 (at our wits end) we visited a doctor in Holland where they agreed Teagan should try full extract cannabis oil – which contains THC. We returned to the UK with the medication where we were met at the airport by customs officers. They confiscated £4500 worth of cannabis oil, leaving Teagan extremely vulnerable. Our situation was heard in Parliament 2 days later where it was agreed her medication could be returned.
This is when Teagan’s life changed. Her seizures reduced dramatically and Teagan started to get her life back. She was able to have full days at school and we could go back to doing things as a family.
Unfortunately we have to go through the private sector to obtain this medication and this comes at a cost of up to £2000 per month. We have been fighting the NHS and the government for almost 5 years for this medication to be prescribed on the NHS but we are still no closer.
I spend my life fundraising for to keep my little girl alive. In the first lockdown we ran out of money and medication and within 2 weeks Teagan ended up back in intensive care fighting for her life.
This is the proof – full extract cannabis oil is keeping her alive. Now I just have the pressure to find thr money every month. How is this ok? Why should a parent be in thr position? This medication is LEGAL. Why do I have to fight