Friday, May 29, 2015

We Chose to Break the Law

As the parent of a special needs child, you learn very quickly to make difficult decisions. They are never easy and with time get harder and harder. 

Last year, as parents we faced our most difficult decision yet, help our child by breaking the law or continue to watch him suffer hundreds of seizures per day. We chose to break the law. We knew the risks we were taking. We were going to give our child an illegal drug in our state. Of course this same drug is called medicine in many other states. We knew we risked jail, and having our other children removed from our care. But our child couldn't wait anymore. His seizures were getting more aggressive, and there were days and nights of uncountable clustering (unstoppable seizures). 

Our child had no quality of life. There were no therapies, no watching t.v., no interacting with us or his siblings, no new medication to try, no new extreme diet or surgical implant to choose. Just Seizures! We were out of options. 

We chose Medical Cannabis Oil. Within days of the first dose, our child was sleeping through the seizures at night. The clustering stopped and his Tonic Clonics, the most aggressive of his seizures, was hardly being noted anymore. After a month on the oil he was more alert, visually more responsive, and more active during therapies. For the first time in over two years, he cried! We got to hear his sweet voice and wipe away his tears. 

His seizures have continued to decrease in number and intensity though we have had some missteps along the way. Learning proper doses, strains, and ratio's hasn't been easy. We are on our own for the first time without his doctor's input, who, by the way, supports our advocating efforts for medical cannabis. 

A few things we have learned, high CBD alone doesn't work for him. He has needed THC to get the best control. No dose has harmed him, just made him a little sleepy. Prior to the Cannabis Oil we counted as many as 400 seizures per day. Since beginning Cannabis Oil, his worst day was 186 seizures. We have had amazing days with as little as 3 seizures. Yes only 3 seizures! We never obtained control of his seizures like this with any of his pharmaceuticals. 

Our child has a quality of life now I never imagined. I certainly prayed for it, dreamed of it, but never truly imagined it until now. My husband and I will never regret our decision to give our child this life changing Medicine. Please support The Medical Cannabis Act, SB3!

"If a law is unjust, a man is not only right to disobey it, he is obligated to do so...rightful liberty is unobstructed action according to our will within the limits of the law because law is often but the tyrants will, and always so when it violates the right of the individuals" ~Thomas Jefferson

Friday, May 22, 2015

Medical Cannabis Round Table

Campaign for Compassion was honored in planning an educational event on Medical Cannabis with Pennsylvania Governor, Tom Wolf and Secretary of Planning and Policy, John Hanger. We genuinely appreciate their support and motivation for bringing attention to the cause.

We were thrilled to have such impactful speaker on the panel including Dr. Bill Trescher, Division Chief of Pediatric Neurology at Penn State Hershey Medical Center and Dr. Bruce Nicholson, Division Chief of Pain Management at Lehigh Valley Hospital. It takes a great deal of courage for two such esteemed physicians to speak on our behalf, especially at a time when the Pennsylvania Medical Society continues to oppose this measure.

Please take the time to watch the entire forum. Even those of us who have researched for years learned something new that afternoon.

Medical Marijuana Roundtable Discussion-5/18/15

Friday, May 15, 2015

How Dare You!

That’s right, I said HOW DARE YOU! How dare you judge us from behind your gloss finished, solid wood desk, in your cushy leather button-tufted chair. Sitting comfortably in your overly ornate office that “we the taxpayers” afforded you. Yes you! OUR Senators and Representatives that oppose a FULLY comprehensive medical cannabis bill. One that would provide relief to so many.

We live with unrelenting pain, nausea, vomiting, spasms, seizures, wasting, diabetes and more. We watch our children, parents, siblings and other loved ones going through things every day that we wouldn’t wish on our worst enemies. We are people and we deserve more! You try to make the world believe that the most vulnerable among us are fighting for cannabis only to satiate a desire to get high. When you look at the highly addictive and intoxicating drugs that are currently being prescribed, cannabis should be the least of your worries. The time has long passed for you to do the right thing.

You want to play God with people’s lives? You want to play doctor? This has gone on long enough! We have prayed for your hearts to find compassion. We have pleaded to you for our loved ones and ourselves. What will it take? Someone dying? Someone in your own family or circle of friends being stricken with a life threatening or terminal condition? Will that get your attention? What then? Will you pass a bill that only helps them? Or will you do what so many across the state are being forced to do right now and become a criminal to save them? I have to wonder how you sleep at night. We have been scolded, like children, when we ask you “what would you do if this was someone in YOUR family?”

“Leave my family out of this!” you say as you scowl at us. How fortunate you are. How blessed you are that you CAN leave your family out of this. However, WE are not so fortunate, we are not so blessed.

We count our blessings in tiny increments. I got out of bed today. I kept an entire meal down. I was able to take my child out without her having a seizure in the middle of Target. I got through a cup of coffee without the tremors forcing a piping hot spill in my lap. My mother remembered my face today.

Why can’t we have more good minutes, hours and days? I cannot wrap my head around it no matter how I try. Watching your fellow man suffer. Allowing antiquated propaganda and misinformation to rule you. Allowing drug cartels to not only thrive but to dictate whether good people can have a chance at a quality of life.

On May 12th,  SB3 passed the Senate with overwhelming support. We couldn’t have felt more elated. We were finally being heard. We were finally being shown the compassion that we so desperately prayed for. We swelled with pride looking down on the Senate floor that day at the forty men and women who cared enough to vote YES!

Our jubilation quickly turned to a feeling of uncertainty as we were dealt another crushing blow on May 14th. SB3 was sent to the House Health Committee. This is where all cannabis-related bills go to die. Was this done intentionally? Was there just too much hope on the part of the advocates? Perhaps it was felt we needed knocked down a peg or two. We have fought so hard already. We are tired of having to fight with those who are supposed to do the will of the people.

So, we will put on our combat boots every day, lace them up and forge on. This is a battle we cannot afford to lose. When will enough be enough? When will you finally see that the people you are denying could just as easily be you, your spouse, your baby, your parent, your best friend? When will you support a fully comprehensive medical cannabis program in Pennsylvania? WHEN WILL YOU HELP US?

~Dana Ulrich

Friday, May 8, 2015

I don’t care how many laws I have to break to keep my child alive...

Campaign for Compassion brings you a special treat in anticipation of Mother’s Day…
A day to celebrate moms in general, but to Elizabeth’s parents, a day to rejoice in so much more...

Hello. It’s me again, “Elizabeth’s mom”. Just shy of one year ago, I told the story of my little girl ("Awakening"). I was so excited that she had gone 23 days without a seizure and I thought I’d go insane if I didn’t share it. Although, it’s tempting to blast out a press release when you have news like this, I’m still in possession of an illegal controlled substance. In Pennsylvania, I’m still going to be considered a criminal, committing child abuse by administering this substance to my child. So here I am, hiding behind a computer screen, almost exploding with excitement, not being able to shout it from any rooftop.

It will be a year on Mother’s Day that Elizabeth finally attained almost complete seizure control. She’s only experienced a few small convulsions, due to switching products. When you’re stuck purchasing medicine from the black market, consistency can be a bit tricky.

You see, that illegal controlled substance is saving my child’s life. Many moons ago, my child was slowly dying before my very eyes, suffering from hundreds of life threatening seizures every single day, until I decided to become a criminal. I managed to find her what I believed to be the only option left, an extract of the Cannabis plant. This oil that I hide away in my refrigerator, save for twice a day when I nervously take it out and administer the tiniest bit under her tongue, is illegal to possess in the state of Pennsylvania.

I’m not certain just how many laws I’m currently in violation of, but I want to make something very clear, I don’t care how many laws I have to break to keep my child alive.

I will stop at absolutely nothing to save her, to spare her from any unnecessary suffering, what mom wouldn’t? Can we all agree that I should not have to look over my shoulder, risk losing custody of my child, or live in fear of prosecution for simply doing what any parent would do?

God gave me this child, or at least loaned her to me for a time. My job is to protect, to care, to provide for my baby, but if my state won’t allow me to administer the only medicine that has ever actually given us any degree of seizure control, then what choice do I have? Sure, I know what you’re thinking, move to a legal state. The thought has crossed my mind. As a mother of a special needs child, I assure you, it’s difficult to afford gas for the multiple doctor’s appointments we go to, let alone gas for a trip across the country, and that is just one small reason why moving is not in the cards for us.

I want to leave you with one final thought, or an imagination, if you will. Imagine for a moment that your child is dying. Imagine each night laying them next to you in bed and resting your hand gently on their chest so that you can feel their breath, knowing that they may begin violently seizing and their breath could be stolen forever. Imagine your child’s doctor’s eyes welling with tears as they tell you they don’t have any treatment options left. Just imagine.

Now imagine finding a cure. Imagine all these days of seizure-free bliss. Imagine the possibilities if we can continue to treat them without potentially having this medicine confiscated, or worse, this child taken away, because their mother is jailed.

 “An unjust law is itself a species of violence. Arrest for its breach is more so.” ~ Mahatma Gandhi

Happy Anniversary, my beautiful girl. Grateful for this one, in constant prayer for many more. And as always, thanking the Almighty for one magnificent plant, and for all of the compelling reasons to continue the fight for it.