Submitted by Danielle and Seth of Florida
Allow Us Access to Treatment
Our little angel Rebecca was born with a genetic disorder called “1P36 Deletion Syndrome”. This means she’s missing part of chromosome 1 causing her to be severely impaired.
We live in fear that one of the epileptic seizures that course through our daughter dozens of times daily could be the one that kills her. Rebecca is unable to walk or talk, has hearing loss, visual impairment, frequent daily seizures and requires to be fed through a feeding tube to supplement her nutrition. She cannot do normal daily activities like dressing or feeding herself and requires 24 hour care. Despite all of her struggles, she is a loving girl with an amazing spirit and always has a smile on her face.
For years, we tried powerful medications to control the frequent, often silent, seizures but the toxins weakened our daughter’s organs and produced little improvement. We were among a growing number of Florida families who have persuaded lawmakers to legalize a strain of low THC marijuana which is non-euphoric and has shown to control seizures in some children. We now have to make sure it is produced safely and get it quickly to the families that could possibly benefit from it.
After years of rejecting proposals to allow marijuana to be sold for medical purposes, Florida’s Legislature recently passed Senate Bill 1030 which would allow extremely limited medical distribution of specialty strains of marijuana shown to control seizure, such as the one named Charlotte’s Web.
For families like ours, the clock is ticking. Strains like Charlotte’s Web may or may not help our daughter. If it does not work, then what? Many of the children in other states need more options than what the legislation allows. I don’t believe that when there are so many sick and suffering patients in our state that Tallahassee politicians should be making decisions about medical treatments for them. This is no only about my daughter, any particular demographic or medical ailment; it should be about allowing patients safe access to the medicine they so desperately need.
On November 4, 2014, Florida voters will decide on proposed constitutional amendment #2 that would legalize doctor-authorized cannabis under certain circumstances. Polling suggests that the amendment has strong support and is likely to pass.Twenty-one states and the District of Columbia allow medical marijuana use. "Do no harm" is the supposed golden rule of medicine. But my child is being harmed every day. My daughter is regressing every day. This legislation could save her life.
All I care about is if there’s something out there that’s working in other states — whatever it is — that’s what we need in Florida. We have seen the CBD treatment works elsewhere, and with seizure sufferers of all types.
Parents like us don’t have time to experiment.