Emily, my 1st and only child, began having seizures at 9 weeks of age. I knew in my heart that the twitch in her right eye was strikingly unusual, and within 48 hours, my suspicions were confirmed by the subsequent twitching in her hands and the full body pike jerks that followed.

Although my heart told me one thing (the God awful truth), my mind told me another......that it would be a ‘quick’ fix, an after-hours doctors visit to prescribe something for whatever it was that she had. After all, she was my 1st child and 9 months of awaiting her arrival had prepared me for all the joys in life she would bring and all that we would have, my Mini-me, my best friend. We would get back to that life, just as soon as we were able to fix ‘that’. I’m sad to say that that doctors’ visit never stopped.

At 6 months we learned of the hypsarrhythmia pattern suffered in her brain. In essence this means that her brain is in a constant state of seizing. With so much irregular activity occurring there isn’t a second’s time to allow for the brain to signal anything else. No time for the signal to speak, breathe, sit, stand, hold head up or swallow. No movement whatsoever, no smiles. Like a computer that freezes up at times and needs restarting, we have practically tried every available pharmaceutical medication in our best efforts to ‘reboot’ her brain. The side effects are abhorrent and the ripple effect does not discriminate against myself.

We’ve come to learn of non-euphoric cannabidiol CBD oil that is currently being used in a number of other states to treat intractable seizure cases. The results have been promising and in some cases astounding. The oil has helped to decrease the amount of seizures for a lot of patients who share similar stories as ours. Our hope is to one day be able to add Emily’s name to the list of children who have benefited from this oil and whose lives have been turned around for the good.

We have asked so much of Emily as she is only 6 years old; harsh steroid injections, medication concoctions, surgery after surgery, the tolerance of unbearable pain, arduous recovery periods, enduring therapeutic sessions, the list goes on and on. She has taken every request in stride, with grace, with resolve and courage and so it is that we ask you for, your support of the Texas Compassionate Use Act, House Bill 892 and Senate Bill 339.

Awaiting a pharmaceutical version of the CBD oil is not an option for our vulnerable children. We ask for the compassionate support needed on a statewide level to give our children and loved ones the simple possibility of improving their quality of life and participating in it.

God Bless Texas and God Bless the United States of America.

 

  

 

Compassionate Access for Epilepsy (CAFE) is a project of the Epilepsy Foundation Texas affiliates.  CAFE Texas brings together Texans and nonprofit organizations that support the therapeutic use of cannabidiol (CBD), a non-psychoactive component of cannabis, to treat epilepsy.