Unable to continue the long-term costs of advanced cannabis medicines, Teagan has deteriorated, requiring intubation. Further treatments haven't been effective. We hope @DHSCgovuk considers our recommendations and brings about urgent access.
#dravetsyndrome#epilepsy
Joining me & @julesserkin on next weeks #BBunker Radio Show our guests are
Oliver & Lucy @prinfab
Emma @ForTeagan
All the details here ==> https://t.co/7I5tTvqoxW
So grateful to @JasonManford and @AshleyBanjo for making the time to meet Teagan today π Thank you so much. Definitely recommend @yellowbrickroad - it was a fantastic show!
#ThereSheGoes It still hits true and depicts the realities & little moments life throws up as a #rarechromo parent. It just keeps on delivering & removing the mystery of our world & a shout out in the episode for @Unique_charity too π #idic15#dup15q
Spent the day interviewing parents of children left in a bleak situation with their cannabis prescriptions. Many are going to end up back in ICU. Some will die.
Because funding and manufacturing their medication in the UK isn't profitable.
The price of a child's life.
For those of you who haven't seen the update on our tiktok page..... Things are extremely scary right now. We don't know what's going to happen #helpforteagan
We are scared for Teagan π
π¨DEVASTATING NEWSπ¨
It's been confirmed today that the doctor that was hoping to step in to prescribe for Teagan is now NOT happening!! We've also been told Teagan's main oil company have closed down. This is the worst possible news we could have got π #medicalcannabis
#epilepsy is now affecting Teagan's skills. I have no idea what's going to happen next month when her private doctor retires π @NHSEngland need to do something desperately #medicalcannabis#helpforteagan
Today we have been told when Teagan's private doctor retires in July there is no replacement! This puts Teagan's life in danger. She needs this medication. Please help us share this. #NHS and #government need to step in. Teagan could end up back like this imminently π
Helping someone whoβs having a tonic-clonic seizure doesnβt have to be difficult. All you have to do is CARE.
C β Comfort
Cushion their head with something soft to protect them from injury
Just a very small snippet of our life living with #epilepsy. Teagan isn't #seizure free but her quality of life is so much better now she's on #cannabis oil. Unfortunately we still have to pay thousands of pounds privately for it. I will continue to fight with the #NHS
I attended @cannabiseuropa last week and spoke on a panel about the continued issues around access for children to cannabis based medicines. I was humbled to hear about what happens when thereβs no access, families are forced to illegally access cannabis. (1) #westandwithyou