Paige's medicines are costing $1000 ever 45 days, the government is not willing to fund it at this stage
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You may have seen the amazing story TVNZ Sunday program did on our little Paige and the amazing results that the medical marijuana has had to help control her seizures.
Both Kelly and myself were living on a few hours sleep a night with Paige suffering between 8-15 seizures a night from about 2am until she got up to get ready for school.
Thanks to a person posting an article on Facebook about a little girl in the USA with the same syndrome as Paige that was being treated with medical marijuana and how she had stopped having seizures. Also the amazing difference in the little girl.
After a lot of work and talking to doctors and specialist we applied for the only legal access to medical marijuana in New Zealand that is Sativex. The application had to go to the minister of health and we were told that there was no way a child would be approved.
But after supplying a lot of information and documented evidence we received the great news that Paige had been given the permission to access Sativex.
Within 2 days of starting Sativex Paige's Seizures had nearly stopped and within a couple of weeks Paige was not having seizures for days and she even went 10 days without a seizure.
Paige goes to a special school for children with special needs, Paige is 11 but has the development age of a 3 -4 year old.
Since starting the Sativex Paige has been able to do things that she could not have possibly done, like being able to draw she even drew a smilie face which blew us away. The other day she cut up a sausage she was having for dinner. Her speech is so much clearer and ability to reason and the glow in her eyes is incredible.
Our Little Paige is coming out from behind a cloud of drugs and seizures, as a parent of a special needs child it's amazing to see her progress.
Unfortunately the government is not funding this and at a price of $1300 a batch our friendly Pharmacist is giving it to us at cost of $1000. This is only lasting us 45 days so we are looking for a little support for Paige's medicine.
If you wish to follow Paige's Blog at www.galliennz.com
We are also working with the specialist to try and get the government to permit a trial for children with Dravet and servere epilepsy to access medical marijuana to treat their seizures.
Straglers Car Club 4 March 2015
Thanks to the Amazing people at the Stragglers for their Cambridge Car show. They generously Gave Paige a check for $6500 to help with her medication.
Paige is doing really well and is still only having a seizure about every 5 days
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