Stephanie Williams: We Are Moving to Colorado to Save Our Daughter’s Life

Photo taken from the Hope For Shania Facebook Page with caption: “12 minute seizure today. Thankfully she came out of it before we had to call an ambulance. Please keep her in your prayers.”

Three-year-old Shania Williams doesn’t just have Intractable Epilepsy, her seizures, known as “status seizures” often don’t stop on their own.

To stop a seizure, her parents must use suppository injections of the powerful anti-seizure drug Diastat during a seizure for up to three minutes of seizing. At five minutes of seizing her mother, Stephanie, is on the phone with 911. Some of Shania’s seizures last 15-20 minutes and they have recently been getting longer.

In January, she suffered a 2.5-hour seizure leaving her over-medicated, asleep for three days and requiring intubation to breath. The 911 calls are constant, on average one a month. She is now on five different medications to prevent the seizures, and has an implanted device to regulate them as well.

Seizures can be fatal for anyone that has them, but for Shania, who also has a diagnosis of a Chromosomal Deletion, it’s more complicated.  She has often turned very blue during seizures and struggles to breath, her head rolling about.

“What if she seizes and stops breathing?” Stephanie says, wary from the routine of fear.

Shania also suffers from Hydrocephalus, due to the Chromosomal Deletion. While in utero, mass amounts of fluid were found on her brain.  At 1-month-old, doctors inserted a shunt in her brain to allow the fluid to drain. At 4-months-old, Shania was being rushed to the ER for severe seizures, where she was diagnosed with epilepsy.

Stephanie and her husband, Shannon, lived at Texas Children’s Hospital in Houston for 1-2 weeks at a time from then on, they still spend much of their time there. Stephanie was no longer able to hold a job and instead spends her every moment monitoring Shania’s health, administering medications and watching for seizures. The family lost their home and car after the loss of income.

The only options to help Shania further are more pharmaceuticals, as all other options, including a VNS implant, have been exercised. Brain surgery was presented as an option, but was not a guaranteed cure, and could leave her blind.

After researching cannabis, Shania’s parents are desperate for help and are seeking a new home in Grand Junction, Colo., to treat Shania, the youngest of their three children.

Stephanie says she has a friend who is also a parent of a child with Dravet Syndrome and is also moving to Colorado. Stephanie saw a link about medical marijuana for epilepsy on Facebook in 2012, and had been researching it as an option for Shania.

“I was not even going to consider giving my child drugs, I was not going to get my child high. Then, in the link, I see these children sitting there, being good, and not being a prisoner to their own bodies! I saw them, and I was in disbelief,” Stephanie says, “I started weeping and I thought, this could be it!  So I researched it and I saw all of the testimony of the children with seizures, cancer and other issues, thriving and being a children, and I had my first glimmer of hope, so I told my husband that we need to keep this in the back of our minds as an option.”

The time to use the option of medical cannabis has come.  There is a job opening for Shannon within his company in Colorado.

“We have tried everything that we can without causing more harm to our daughter and it’s hard, so hard to leave everything that we know,” says Stephanie, “I try not to have anxiety, but I have to try, because if she dies because I didn’t try, I would never forgive myself. I live in one of the best places for medical treatment. I live in Houston, and as much as the doctors have tried, the care is mostly not helping. She’s not stable.”

“Some of these medications she has been on since she was 4-months-old. I don’t want to see my daughter on any more of these medications and she can’t handle a wean off of them. When we get her stable on the CBD oil, we can start weaning her off of these medications.”

“I looked at it from a medical point of view, and there is a need for this medication. People can judge all they want but until they are in our shoes, they have no idea,” says Stephanie.

HOW YOU CAN HELP:

Follow Shania’s journey on Facebook.

Donate to the family’s fund, help them move to Colorado.

Read More about the Undergreen Railroad in Issue 10 of Cannabis Now Magazine, On Stands March 2014.