Written Testimony from Leah Robins 4/12/2016.
Hi guys hope you are all staying strong especially after the horrendous events of the past few days.
I thought I’d write a piece in support of all the amazing, selfless work that you do for humanity. Please feel free to use this everywhere.
If you need me to do a video, I can but I am so much more articulate when I write.
I am a parent of an 11 year old boy who was given a primary diagnosis of autism from the age of 21 months.
At the age of 5 years old he was also given a formal diagnosis of Intellectual disability due to being unable to complete any of the standardised IQ testing (WISC)
At 5 years old he also experienced his first seizure. In the first few years they were complex partial seizures but after 4 years they became Generalised and were irretractable (status epilepicus). Toms seizures would not stop without the intervention 1-2 buccal doses of midazolam to which I had to administer. His longest seizure was 45 min. Seizures also involved ambulances and hospital admissions.
My son is also non verbal, he is not fully toilet trained, needing pull ups to empty his bowels.to add to this my son was self harming, smashing his head on the ground, slapping his head, gouging and biting his arms and legs until they bled. The doctors gave us a myriad of anti-anxiety meds (lexapro), ADHD meds (Ritalin), antipsychotic meds (Risperidal) to try alongside his Epilim for seizures and Melatonin for sleep issues.
The effectiveness of some of these medications was at best transient and at worse detrimental.
The use of some of these meds have been linked to irreversible and fatal liver disease. Tom had blood tests that showed that his blood levels of glycine and free fatty acids were high due to side effects of the medications he was on. He constantly pinches an area of skin directly over his liver to the point he has a permanent bruise. As he cannot speak I often wonder if he is trying to communicate any discomfort. Who knows?
Some of the medications he was prescribed also list movement disorders as their side effects.
On Boxing Day in 2014 Tom began ticcing. First it was just a shoulder shrug. Within a day he was having complex tics. Both vocal (screeching) accompanied by jumping, twirling and twitching.
Tom was taken to Ballarat base hospital because he was crying and so exhausted from acting out his tics.
He just couldn’t stop. It was like he was in a loop. He couldn’t control his body.
The paediatricians at Ballarat were sympathetic and scratching their heads but couldn’t offer any assistance.
3 days later Tom had a seizure lasting over 10 minutes and he required an ambulance and hospitalisation.
The next 6 months we were in and out of hospital, both in emergency and admitted for seizures, 2 anaphylaxis episodes (bee venom), ticcing uncontrollably and cellulititis of the face due to impacted teeth.
His life became so torturous. His paediatrician said that he had no answers. His words were “Get some respite organised because I believe that this is just how it is going to be for Tom.”
Refusing to accept that I started researching and it is here where it both gets exciting and heartbreaking.
I read 100s of medical articles and peer reviewed studies about epilepsy, Tourette’s, anaphylaxis and allergies and the immune system. A very common thread between all of these ailments
was how they can all be modulated by the endocannabinoid system.
How amazing is that. I found out that CB1 receptors were in a abundance in the basal ganglia. (the area of the brain responsible for Tourette’s and other movement disorders
such as Parkinson’s). I read case studies from oversees where people were getting relief from their tics from
using Medical Cannabis with no ill side effects. I also read that there is no other known medication
that successfully treats Tourette’s.
I read about the miraculous effects of Medicinal cannabis on paediatric epilepsy. Of how the endocannabinoid system can inhibit action potentials in neurons and modulate the threshold required for neuronal firing.
I read about the CB2 receptors abundance in the humoral cells in the bone marrow. Of how the Endocannabinoid system modulates the immune responses and can assist in inhibiting the release of cytokines and histamine from mast cells.
Finally I read how amazingly safe this medicine was.
The heartbreaking and devastating news is that I was unable to legally obtain or use this medication.
I watched as Cooper Wallaces parents were harassed and threatened by authorities here in Victoria. How in the
end our Premiere Daniel Andrews intervened.
I watched videos on the Amazing work done by Dr Andrew Katelaris. I knew he was the one person who knew the science. My whole family drove from country Vic to Newcastle to source our medication from The Church of UBUNTU.
My son is now 2 years seizure free. He hasn’t has a seizure since starting the medicinal cannabis.
His tics are 80% better too.
The proof is in the pudding. The pharmaceutical drugs failed and the medical cannabis works.
We were so close to giving our son up to the government as we were
not coping with the heartbreak or the stress. Medical cannabis saved our sons life. It gives him
a quality of life and dignity.
Medical cannabis has enabled our son to participate in the world.
Medical cannabis has also saved the destruction of our entire family unit.
If it were not for the UBUNTU team I probably would also not be here today. I was suicidal. I was severely worn out and depressed beyond belief. My sons regained health and happinesss has saved me. I no longer
have to watch him suffer. It is a blessing beyond belief.
Please amend the laws to save our children.
Without the selfless, self sacrificing humanitarian compassion shown from The Church of UBUNTU I cannot imagine where our lives would be.
The people are begging their representatives in Parliament and Government to enable us to
access this medicine. To restrict access to this medicine is an absolute abomination.
I believe that my love, my duty of care and my responsibilities as a parent are paramount. As a parent have no other choice than to honour these things.
These things though are unfortunately are at odds with the current laws. Must I have to make a choice?
Must I put my child’s health and life at risk or break the law?
I’m sorry but the law is scientifically
and ethically wrong. It’s draconian at the very least. I will have to defy the law because as a mother I
have no other choice.
I am forever grateful and indebted for the persistent and continued defiance of the medicinal cannabis community. I owe both mine and my sons life to them.
Show compassion and intellect and change the laws. Give amnesty to the growers and patients. Let my beloved UBUNTU team continue their extremely valuable work unimpeded and without fear of persecution nor prosecution.
Ps. thank you beautiful souls for your endless love and respect.