We are so thankful Oliver is one of the few chosen children to be in the clinical trial at Mass General for cannabinoid therapy...without it we'd be splitting up our family and moving him to Colorado as well (it is truly the only option for NC families). Can you imagine that? And yet folks are doing this all the time. Shouldn't there be another way? These are families who have endured more than their fair share of hospital stays, near death experiences, and bankrupting medical expenses. But you wouldn't hesitate to move or spend every dime you had to save your child's life, right? Yeah, us too!
We admit this is not a cause we would have imagined taking up, but we also never dreamed we'd have a child who could lose his life to seizures.
We could just take the golden ticket to our clinical trial and stay quiet on NC issues, but then we saw the tears in Zoe's mom's eyes. You see, sweet Zoe doesn't go to Boston for her medical care, and it is very unlikely she'll get into a clinical trial. Her seizures (though more frequent) aren't as dramatic as Oliver's. How do we look in her mom's eyes and just walk away and do nothing? We're not politicians or a recreational marijuana zealots, but parents who aren't going to stop until Zoe (and every other child that needs it) get access to a life-saving treatment. Who will speak for our children who can't speak for themselves? Who will walk to the gates of hell to save the life of their baby? Who will keep writing letters, attending meetings and knocking on doors? Parents of kids with intractable epilepsy do it every day, but but we need your help!
We realize much of this is anecdotal, but since Oliver has tried:
over 20 medications (one that can make him permanently lose peripheral vision)
a medical diet
a failed brain surgery
a failed Vagus Nerve Stimulator
why wouldn't we try CBD treatment?
Help us.
This is the FB page of Families in NC trying to get CBD oil to our children.
We would love it so much if you, our dear friends, would help us raise our voices to get children relief from the seizure monster. We think it is possible in NC, but there must be a chorus of voices so loud that our legislators will pass a bill.
You could pray for wisdom for all of us parents as we try to find the time and resources to pursue this. We already have incredibly full plates with doctor's appointments, medical insurance issues, managing nurses, ordering meds, etc...
Here are some links you might want to check out...
Good news from the office of Walter Jones:
http://www.starnewsonline.com/article/20131216/ARTICLES/131219770
http://www.sltrib.com/sltrib/news/57118270-78/utah-marijuana-hemp-colorado.html.csp
Oliver's classmate and dear friend, Netta:
http://www.starnewsonline.com/article/20130921/ARTICLES/130929951&tc=ix?template=printpicart
This is related to the study Oliver will be participating in through Mass General in Boston:
http://www.medscape.com/viewarticle/817701
The little girl who began a movement:
http://www.cnn.com/2013/08/07/health/charlotte-child-medical-marijuana/
http://www.nj.com/politics/index.ssf/2013/12/fda-approved_medical_marijuana_clinical_trial_gets_underway_next_month_for_kids_with_epilepsy.html
http://www.nytimes.com/2013/12/06/us/families-see-colorado-as-new-frontier-on-medical-marijuana.html?hpw&rref=us&_r=1&
http://www.huffingtonpost.com/2013/12/03/medical-marijuana-epilepsy_n_4378929.html
http://www.koaa.com/news/families-flock-to-colorado-for-mmj-to-treat-children-with-epilepsy/
4 comments:
YES! Desperate parents indeed. This is all very well said. I feel like the cannabis stories from around the country are coming fast and furious. I've joined a FB community in Maine and it's been great to share info.
Thanks for keeping this conversation going.
Heather
P.S Liam got an A on the paper you helped him with. Thank-you!
Stephanie, I hope this treatment help Oliver and all who are challenged with epilepsy. Think of you and your family often. Hope that Christmas is merry and sweet...and all the best for you and yours in 2014! XO!
Praise God that Oliver gets to be part of the study!
God has been brining you guys to my mind a lot lately. I'm praying these verses for you:
"Now I want you to know, brothers and sisters, that what has happened to me has actually served to advance the gospel. As a result it has become clear throughout the whole palace guard and to everyone else that I am in chains for Christ. And because of my chains, most of the brothers and sisters have become confident in the Lord and dare all the more to proclaim the gospel without fear." (Philippians 1:12-15)
I pray that God will continue to make you bold in your faith as you seek healing for Oliver, and that everyone would see God's grace and hope in you. I pray that you will always "smell like Jesus" (as my Dad would say) to everyone you encounter.
"Jesus went throughout Galilee...healing every disease and sickness among the people. News about him spread all over Syria, and people brought to him all who were ill with various diseases...those having seizures, and the paralyzed; and he healed them. Large crowds from Galilee, the Decapolis, Jerusalem, Judea, and the region across the Jordan followed him." (Matthew 4:23-25)
I pray that, just like in Galilee, people all over - all of the places you travel, and in all your circles of friends - would hear about Jesus because of Oliver. And that, just as he did for people all over Syria, Jesus would heal Oliver of his seizures.
I get so upset this is not available for everyone! I wish people would understand desperate needs sometimes call for desperate measures. They may be surprised how effective unheard of treatments can be.
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