Another Voice: Why is Albany denying our son needed medical care? - The Buffalo News

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Another Voice: Why is Albany denying our son needed medical care?

By Mark “Buc” Williams

Our son, Thomas Frank Williams, was born a healthy baby boy on June 7, 2005, but several months later he began having seizures. After further tests, he was diagnosed at the age of 5 months with infantile spasms, a very rare and severe form of epilepsy.

He was immediately treated with many different types of anti-seizure medications. He was also placed on a special diet, but no matter what was tried, he continued to have more and more seizures, often more than 100 per day. Over the next six years, we took Thomas to numerous neurologists around the country at some of the best children’s hospitals, all of whom agreed that he had Lennox Gastaut Syndrome, a severe seizure disorder that is common among children with infantile spasms and is notoriously difficult to treat.

For the past eight years, we have tried every anti-seizure medicine available, including some experimental ones. Nothing has worked for our son. We endured years of searching and praying for a miracle, sleepless night after sleepless night, month-long hospital stays and countless doctor and middle-of-the-night ER visits. The neurologists say he has permanent brain damage and more than likely will never walk or talk. Without an effective treatment that will control the seizures, Thomas’ long-term chances for survival are minimal at best.

We have joined several epilepsy groups and Lennox Gastaut Syndrome organizations and have learned that many children with similar stories are experiencing amazing results thanks to the use of CBD, an oil extract from the cannabis plant. Other children with seizures who were also told they would never walk or talk are defying the odds, all thanks to an herbal medication with virtually no side effects.

Although it doesn’t always work, there’s a very good possibility it could help Thomas. We cannot believe this potential miracle is banned from use in New York State. How can this be?

After years of searching and praying for a miracle, when it’s finally within reach we’re told, “sorry, the Senate refuses to vote on it.” Our legislators should be ashamed of themselves. With all the documented research available and with the tight distribution regulations and restrictions being proposed, what possible reason can there be to deny so many who are suffering a chance for a better life?

We urge the governor and the Legislature to take the time to read the available literature and review all of the facts. This new medicine has been proven to be safe as well as effective.

Medical cannabis can help millions avoid pain and suffering and even save lives. It is legally available in more than 20 states. It is unconscionable that residents of New York are being denied access to this revolutionary treatment.

Mark “Buc” Williams lives with his wife, Patti, and son, Thomas, in Lockport.

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