Hope for Harper
Posted on October 26th, 2016 to Education
Harper Howard was only alive for 5 years, but in her short life she changed the world.
When she was two weeks old, Harper’s mom, Penny, and her dad, Dustin, discovered that Harper had a very rare, non-hereditary, life-threatening genetic disorder called CDKL5 epilepsy. She started experiencing severe seizures.
When she should have been learning how to stand up and walk on her own, learning how balance her wobbly legs on the carpet, she was instead having over 40 seizures a day.
“I hate the way it sounds, but Harper just became catatonic. She became unresponsive and she wasn’t able to even look at us,” says Penny.
Traditional pharmaceuticals gave Harper little relief, if any, and came with dangerous side-effects. As the weeks went on and Harper became worse and worse, her parents prayed for God to find a way to bring their daughter peace.
“Unfortunately, it was too dangerous to ween her off of the medication entirely, so we started looking for something else to help her,” says Penny.
Harper’s parents began researching alternative ways to help their daughter. After researching and finding Sanjay Gupta’s documentary about CBD oil, they decided to try Real Scientific Hemp Oil (RSHO), to help Harper. They had heard the benefits of medical cannabis, but they couldn’t move to Colorado because they had another daughter, Lily, and it was too difficult to uproot the family and start over without the help of extended family. however, RSHO is legal and was an option that they could try in their home state of Texas.
“I’ll never forget giving the CBD oil to Harper and seeing the immediate impact it had on her quality of life,” says Penny. “Within the first three days we had eye contact and verbalization sounds from her, an attempt to interact with us physically and she was now able to show us that she was with us mentally. It wasn’t long before she went a day without a seizure.”
Penny began to write about her experience with CBD oil online, in hopes to help other children like Harper.
“I don’t want to say that this is a cure-all for every single child, but it is something that helped my child achieve a better quality of life for the short time that she was here,” says Penny. “That is what I want other parents to learn from my experience. It could help your child, too.”
Penny dealt with the stigma of choosing to treat her child with medical cannabis, and it grew frustrating, but she kept going because she knew it was helping.
“Never let society dictate how you can help your child,” she says.
How Harper Changed the World
Half a world away, in Brazil, a family discovered the blog that Penny had started, called Hope for Harper.
“How could I ever know that Katiele Fischer, a mother of another CDKL5 daughter Anny Fischer in Brazil, would find Harper’s blog from thousands of miles away as she desperately searched for her own answers?” says Penny.
Fischer had RSHO shipped to her illegally to try to help her daughter, and within days the family discovered the same results. Anny experienced fewer seizures and the family felt that they were starting to get their baby back.
Although Fischer was caught importing the RSHO illegally, she decided to fight back so that more children in Brazil could experience the relief that her daughter had. In April 2014, Fischer stormed up the steps of ANVISA, Brazil’s FDA, and sued the federal government of Brazil for her right to access RSHO to save little Anny.
In just three days, ANVISA ruled that it would be “inhumane,” to keep CBD oil from Anny, setting a legal precedent that would end up changing the world. Dozens of families across Brazil sued the government after Fischer’s ruling, revolutionizing cannabis laws in the ninth-largest economy in the world forever. As things stand today, Brazil is not only allowing CBD hemp oil to be imported into Brazil as a medication with a doctor’s prescription, the Brazilian government is subsidizing the payments under their healthcare system. And now, Brazil is allowing CBD from hemp to be imported for more than epilepsy, but also for several other medical indications, including Parkinson’s disease and chronic pain.
“I never thought in a million years that it would reach that far and help so many people,” says Penny. “But I am so glad it did. After what happened in Brazil, I now read that Colombia, Chile, and now even Mexico have legalized CBD oil as well. My heart is full! My Harper, unknowingly to us, helped change the world. Despite all of her struggles and all of her suffering, I like to think that Harper was an angel, and that helping save all of these poor suffering people in Central and South America will be a part of her legacy forever.”
On Jan. 8, 2016, Harper lost her battle.
“I can’t describe what that loss felt like,” says Penny. “But to know that my little angel, my little hero was here for such a short time and made such a huge difference for the world really makes me proud to have been her mommy.”
Since then, Penny has become dedicated to making sure that children who suffer from any disease, be it epilepsy or cancer or anything in between, has access to the medical care that they need.
“We need more research so that this plant can be used to its full potential to help suffering children,” says Penny. “I can’t stress enough that we need to remove the stigma and make this legal and available so that kids like Harper and Anny don’t have to fight for the best treatment.”
“My daughter already did her part to change the world,” says Penny. “The rest is up to us.”
To learn more about medical cannabis and RSHO, click here.
Make sure to vote yes on Amendment 2 this November to help further research and make medical cannabis available to those who so desperately need it.