Urging Grassley to move....

My opinion piece got published in the Cedar Rapids Gazette! You can read it online here. 

My son Abram has been struggling from the start. He came into this world via an emergency C-section and then suffered meconium aspiration, respiratory distress, and jaundice which culminated in an unexpected stay in the neonatal intensive care unit.

In June 2013, just before his first birthday, we learned that Abram has a cystic lesion in the deepest part of the brain. He also suffers from hypotonic (decreased muscle tone due to an underlying disease/disorder), global developmental delays, sensory processing disorder, and in October 2014, he was diagnosed with a Generalized Seizure Disorder and Epilepsy. Most recently, we learned he has Focal Cortical Dysplasia (a congenital abnormality of brain development and common cause of intractable epilepsy) as well as Mesial Temporal Sclerosis. Both of these may be the fundamental causes of both his developmental delays and his seizures.

All of these diagnoses severely limited Abram’s early childhood. We could not do many of the things that new parents look forward to doing with their family. We could not go out to eat because the lights and sounds were too much for him to handle. If a fork dropped across the room, Abram would writhe in pain, screaming and crying, and we would have to leave immediately. Even getting him to eat at home was a challenge, as certain food textures or smells would cause my son to react violently. Holidays and birthdays were also hard on him because the sounds of tearing paper off gifts and the noise alone were debilitating to him. There was nowhere I could take him to play, as parks and playgrounds were too overwhelming for him. The sudden temperature changes in a splash pad or a strong smell often triggered a seizure. As a stay-at-home mom, it was difficult not having a safe place for my son to play outside of the home with other children.

This past May, our neurologist told us about a medicine called Cannabidiol (CBD). CBD is a nonpsychoactive medical marijuana oil that has been used to treat pediatric seizure disorders. It took months for me to decide on trying it, despite the numerous times that it was brought up by our physician. I was nervous and scared. But in the end, I knew I had to try it for my son, after his prescribed drugs caused increased and worsening seizures, as well as other serious side effects, including my toddler harming himself.

After introducing CBD as part of Abram’s daily medicine regimen, his improvements have been remarkable. His sensory issues have improved dramatically. We can finally take him out to dinner, without worrying about excusing ourselves mid-meal. We can finally take him to the park, the beach, and the pool. In fact, after meeting a family in the park last month, he climbed up the slide just like our friend’s little boy had. I cried at the top of the slide because I got to see him be a daring, fearless boy for the first time.

Thanks to CBD, my son can have fun like a typical little boy. Not only is he having increased cognitive abilities, he has been free of physical seizures since June. This is not something we could have imagined a year ago. He is doing things now that many of our doctors told us he would never be able to do to. Abram is improving more and more each day and is surprising all of his therapists with his newfound abilities. I want all families to have the same opportunity I did. Watching Abram suffer for the first years of his life left me feeling powerless and hopeless, No parent should have to go through that.

Unfortunately, while CBD is legal in Iowa, it remains illegal federally, meaning that gaining access to certain strains that are developed in places like Colorado is illegal. Earlier this year, the CARERS Act was introduced in the Senate. This act would exclude CBD from the definition of marijuana. This is important because it would allow CBD to be transported across state lines. It would allow families like mine to get the treatment they need without going to extreme lengths or risking federal prosecution. CBD has none of the recreational uses that people associate with marijuana. It is a medicine, and it is about time that it gets treated as such.
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Despite growing support for the CARERS Act, Sen. Chuck Grassley, who chairs the Senate Judiciary, refuses to hold a hearing or a vote on this important bill. On behalf of all the families who have suffered like mine, I urge him to reconsider and to give this important legislation the attention it deserves. Children like my son Abram have dealt with enough pain in their lives, and every day that Sen. Grassley waits just adds more. Thousands of young Iowans would benefit from this bill, and we need a senator who will stand with them.

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