Mum fights on for her children
Ra Timms knows there will one day be a cure for the cruel disease that took her daughter's life and is chipping away at her 23-year-old son.
But because it is a very rare disease, little is currently known about it.
That is why she felt so great when Batten Disease New Zealand (BDNZ), which she started, donated $10,000 to the Batten Animal Research Network (BARN) recently.
Batten disease is a neurological disorder that animals also suffer from, so any research BARN does will further the hopes of New Zealand families struggling with the rare disease. BARN operates out of Lincoln College and Otago University.
Mrs Timms set up BDNZ as a support group for the families of the five Batten disease sufferers in this country, including her son Brad.
The group keeps in touch on Facebook, research is shared and money raised helps with such things as subsidising trips overseas to learn more, or going to a camp where parents have time out while caregivers attend to their children.
"Whatever I can do I try and do," Mrs Timms said.
She does it because she understands the suffering Batten disease causes.
Her daughter JordynRose had a normal, apparently healthy early childhood. The first signs of the disease occurred when she was five when her vision began deteriorating, along with occasional seizures.
However, it wasn't until she was 12 the Batten disease diagnosis was made.
It is a neurological disorder that effects every cell in the brain, and then the body. It inflames the brain and then compromises the running of every organ until they can no longer sustain life.
JordynRose died 19 months ago at the age of 19.
The disease has also started to take its toll on Brad. He is just transitioning to a wheel chair.
"His seizures have increased and he has difficulty swallowing and eating sometimes now."
Batten disease is genetic. Both parents have to be carriers of the gene, the chances of which are rare in itself. It is a recessive gene which means that, statistically, one in four of any children the Timms had would be affected. In this case, heartbreakingly, both Jordyn Rose and her brother Brad were diagnosed.
She pushed very hard "and generally made a nuisance of myself" to get access to a trial drug which is used as an immunosuppressant in organ donor cases, but unfortunately it didn't help Brad, although it has helped others.
"For me as a parent it's just this need to find a way even if it's the long way, to make it better for all the children. It's a cruel, cruel disease.
"It's not just the blindness, or the seizures or the wheel chair, it's not just the heart problems, it's not just the dementia, it's all and more."
As the disease progresses it also causes physical pain and suffering, and Mrs Timms has described the hell of witnessing her daughter in extreme pain in a previous South Canterbury Herald story.
She also knows that medical marijuana, if it was legal here, could make life a lot better for her son.
"Judging by what's going on overseas, it's a really positive move."
There have been "great success stories" everywhere medical marijuana is legal.
"People say you don't know what damage it will do but the cocktail of drugs (her children have had to take), if that's not doing some damage I don't know what is.
"There's nothing else out there, so little is known about it, you have to try for the sake of your child."
Mrs Timms is aware of other New Zealand parents, of similar or different diseases who want to be able to use medical marijuana.
It differs from street marijuana in that it can be pharmecuetically produced in standardised form and is generally milder.
"We should at least be given the chance to try it then make our own conclusions. If it was legal I would undoubtedly try it for my child. I would definitely, definitely try it."
CAR SHOW SUPPORTS RARE DISEASE
The all comers Car Show is being held again this year, with all makes and models of cars, utes, pickups and motorbikes welcome on May 25.
The show was held for the first time last year, raising $3000 for Batten Disease New Zealand.
It was organised by Ra and Mark Timms who lost their 19-year-old daughter JordynRose to the currently incurable Batten Disease 19 months ago, and whose son Brad also suffers from it.
Mrs Timms said last year they had only heard from a few participants before the show and were expecting about 30 vehicles to turn up - instead 130 arrived.
The show was also well supported by the public, who for a gold coin donation can spend several happy hours checking out all variety of wheels, including classic cars.
"If you're a real car enthusiast you like nothing better than to be around cars and show off what you've got. You might have started off with an old wreck, some of them have been beautifully done up."
Mrs Timms said she doesn't get into the nuts and bolts side of old cars but "I just love them, the classic design and their lines, the fact they're not like anything else ... and have real character".
However, it's not just old cars that are invited, she would love anyone with a special car to share to come along and some of the car yards will have new cars on display.
Participants pay $10 for a car and $5 for every extra car owned by the same person.
All entries go in the draw for spot prizes, and judges will choose first, second and third prizegetters from among the cars. There will also be a prize for viewers' choice.
For spectators it's a $2 donation to enter and there will be a bouncy castle and food available.
This year it is also hoped to have stalls, including for car parts. Expressions of interest are being taken.
Pre-registration forms are available or register on the day (from 9am).
Contact Mr and Mrs Timms on 03 684 6481; Ra on 021 477 006 or Mark on 021 277 4651; email email@example.com with Car Show in the subject line. The All Comers Car Show will be at Phar Lap Raceway Market Green, State Highway 8, Timaru on Sunday, May 25 from 10am to 2pm.
SOUTH CANTERBURY HERALD