Family battling medicine costs

SHARE

A Timaru family is paying a high price for a healthier, happier life for one of its members.
Maria Tobin has been using her personal savings to fund her 27-year-old son Benji’s supply of Sativex, a medicinal cannabis spray, to help the symptoms of his epilepsy.
The medication costs about $1200 per month and is the only approved cannabis-derived medicine available in New Zealand.
The spray requires ministerial approval before it can be administered.
The family is now raising funds to pay for Mr Tobin’s ongoing Sativex treatment, which he began in April.
‘‘He has just been responding really well to it,’’ Mrs Tobin said.
‘‘We have been doing as much as we can to help raise the money for it. This includes a movie night next Tuesday and I’ve been fundraising at my work, Talbot Park, selling clothes.’’
A Givealittle page has also been set up, so far raising $3376.
‘‘Everything is just ongoing,’’ Mrs Tobin’s daughter, Stef Green, said.
The family was introduced to medicinal cannabis after a doctor referred Mr Tobin to a neurologist.
‘‘I had also just seen news footage about it and thought ‘This has got to be good for Benji’,’’ Mrs Tobin said.
Mr Tobin was born a happy, healthy baby but this all changed when, as a 2-year-old, he started having seizures.
‘‘Stef was only 5 months at the time and Benji had just been at his first time at daycare.
‘‘We came home and he wanted an ice-cream and I said ‘no’ so he said he wanted to go to bed.’’
After a while Mrs Tobin started hearing noises coming from her son’s bedroom.
‘‘I went in and he was [having a seizure]. It was the most frightening experience.’’
From that point the family’s life was changed forever as Mr Tobin’s muscles on the right side of his face started to droop and he began to lose muscle control in his right arm.
Many tests and operations were performed in New Zealand, and Germany, where the family lived for five years from 1991, but nothing could control the seizures and nobody could tell the family why they were happening.
Mrs Tobin said taking epilepsy medication had become a part of life for her son. Medications had been altered and added over the years.
Those medications had in some ways ‘‘controlled’’ Mr Tobin’s seizures but his seizure activity had remained high and he was often in a state of ‘‘overdose’’.
‘‘These medications have significant side effects such as aggressive tendencies, irritability, drowsiness, muscle weakness, memory loss and depression, to name a few.’’
He was having several seizures a day and his muscles had weakened dramatically.
Wheelchair-bound, with slurred speech, Mr Tobin has been on life support twice in the past three years — increasing the damage to his brain and seizure activity. Mr Tobin now lives away from his family in a care facility.
Eventually the family hopes Sativex will greatly reduce his seizures and relax his muscles so he is able to start physiotherapy to regain some strength. – A movie-night fundraiser is being held at Movie Max Timaru on Tuesday next week, at 7pm. The movie is Sing Street and tickets are $20. Alreadyone theatre session is booked out, so another session is being run at the same time. Tickets are available from Stef Green on 0272 361-864.