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Saving Sadie

Posted on: August 30th, 2016 by Angela Ardolino No Comments

Sadie Birthday-001

The day that Sadie Higuera was born, something was wrong.

Although her tiny eyelashes were perfect and she had all ten fingers and ten toes, her body wouldn’t stop jerking and the doctors couldn’t tell her parents, Brian and Damaris, why.

When Sadie was just a few months old, her parents took her from their home in California to the Mayo Clinic where she was diagnosed with Schinzel-Giedion Syndrome, a rare genetic disorder. She had tumors on her neck and liver, as well as epilepsy. She experienced relentless seizures; her first grand mal seizure occurred when she was just 3 months old.

Her tiny, perfect eyelids would remain closed—sometimes for days—as the seizures make it hard to open them. Her face often turned a blue-gray shade.

Before her third birthday, Sadie would experience 300 seizures a day. The neurologist told her parents that they would not be able to help her for a few months, but that it was unlikely she would make it to her next birthday.

Sadie was put on a variety of steroids and other medications, but they caused kidney issues and whole host of new problems.

“They [doctors] basically told us that we needed to give her [stronger medications], that it would definitely end her seizures but that it could end her life in just a few months,” says Sadie’s father, Brian Higuera. “They wouldn’t even give her occupational or physical therapy because they felt she was too far gone.”

Higuera knew that there had to be another option.

“When the medical community tells you need to end your child’s life, to be her hero and end her suffering, it is something no parent should go through. There is another option,” says Higuera. “That is when we decided to go the medical cannabis route.”

Her parents decided to treat little Sadie with Cannabidiol, also called CBD oil, which has little to no THC (the part of the plant that gives the “high”) but has several health benefits– one of which is treating seizures and tumors, according to Dr. Stuart Titus, an expert in medical marijuana research for HempMed.

“We are very confident in the quality and safety of our CBD oil,” says Titus. “Hemp is a natural food for humans and with the huge number of endogenous cannabinoid receptors proven to be in the human body, plant-based cannabinoids can potentially supplement this large self-regulatory system. So we believe botanical CBD once tested is safe, at least by HempMed’s standards.”

The Higueras had to search hard before they finally found a doctor who would treat a child at such a young age. The doctor decided to use a type of CBD oil called RHSO (Real Scientific Hemp Oil), which is CBD only, as well as a supplemental oil that contained a small amount of THC.

Afraid of how her other children would react, Sadie’s mother took Sadie’s siblings, then 2 and 4, to the park while Sadie’s father gave the infant her first treatment. Within 10 minutes of giving Sadie the CBD oil through a G-tube (a tube inserted directly into her stomach because she is unable to swallow), Higuera noticed a difference.

“I noticed her eyes stopped twitching. It had been six months since I had seen that. Her eyes always moved from side to side, so I almost couldn’t believe it,” Higuera says. “Her body even relaxed. It was a miracle.”

When his wife came back, he didn’t tell her what he had noticed, afraid that perhaps he was seeing a change because it was something he was desperate to see. However, she noticed immediately.

“She looked at Sadie and said ‘I got my baby back!’” says Higuera.

Suddenly, Sadie was able to follow her parents with her eyes; she was able to focus on what she was seeing. She hadn’t been able to do these things since she was 3 months old.

“All of those steroids took our baby from us, and the RHSO [CBD oil] gave her back to us,” says Higuera. “From there it has been one leap and bound after another with her.”

Now, Sadie is 3 years old and is able to go to school. She still has seizures, but not nearly as many as she was having before. She has scoliosis and aches and pains, but is able to function with less difficulty than before, and her parents couldn’t be happier with her progress.

“We take it day by day,” says Higuera. “But the things that were always the most life-threatening were the seizures and it [CBD oil] has been a game changer. A life changing deal.”

Sadie can communicate now; she can play with her siblings and her family can finally enjoy getting to know their little girl. She even has normal sleeping patterns now, which her parents were not sure she would ever have. The swelling in her spine has also gone down, which means she does not have to wear a back brace full time. Her doctors have seen a major reduction in the number of tumors in Sadie’s body as well.

“She is pretty much treated like a normal child now, and that wasn’t possible before,” says Higuera, his voice filled with pride. “It [CBD] has changed our lives.”

Because of the restrictions on CBD oil, the Higuera family encountered quite a bit of red tape to have CBD oil administered to her in the ER. They were given a social worker when Sadie was admitted to the hospital and at first, it was difficult to receive the treatment she needed. However, after working with the state and the hospitals, now she is able to receive the oils she needs at the hospital and through doctors. If Sadie has a seizure at school, her parents have to take her off the grounds to administer CBD oil, but she is able to get back to her routine fairly quickly. Because they live in California, it is easier to purchase the oils she needs.

Currently, Florida law allows the production and use of CBD oil. However, those who produce it must pay a $5 million bond to the state of Florida. This makes it increasingly difficult to obtain the oil without leaving the state. This could change in November, when medical marijuana will be on the ballot in Florida under Amendment 2, which would allow the use of marijuana and marijuana- related products to treat illnesses when prescribed by a doctor. Amendment 2 will require at least 60 percent of the vote to pass.

The benefits of CBD oil and hemp products outweigh the risks, according to Titus. “Currently, no other medicine exists to effectively cure any neurodegenerative disease, according to the Institute for Neurodegenerative Diseases,” he says. “There is tremendous research going on throughout the world on the science of the cannabinoids. We believe there are potential applications for neurology including Parkinson’s and Alzheimer’s. In Spain CBD has been researched to assist with depression. It is also used in Israel for bone healing. CBD seems to assist the body’s natural processes via the endogenous cannabinoid system. So people can take this to achieve improved health and wellness; we do hope to eventually have a recommended daily intake established.”

Because of the changes that they have seen in their daughter, the Higuera family shares their story to prevent other children from needless suffering.

“Doctors have seen us and heard our story and give our information to their other patients so that we can tell them our story,” says Higuera. “Family members who are very against drug use have seen the difference and have learned more about how medical marijuana can be a game changer for so many of us. If we can help more children to live a normal life, than all of the danger of talking about CBD is worth it.”

Higuera understands that other parents may criticize his choice, but that only when you are faced with overwhelming negative odds and no other options will someone understand.

“We got our daughter back,” says Higuera with a sigh. “That is all we could ever ask for.”

To learn more about Dr. Titus’s research and CBD oil visit, www.ParentingwithAngela.com/CBD.

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