Family Tied Together by Rare Disease Meet for the First Time

THE COLONY --  Two families tied together by a rare genetic disease met for the first time Friday.

“I was very excited,” said Penny Howard.

Norberto Fischer and his wife Katiele Fischer felt the same way. “There are no words to express what happened inside us.”

The disease, CDKL5, which causes multiple seizures a day.

Penny Howard’s 5-year-old daughter Harper battled the rare disease her whole life. Harper's folks were treating the seizures with  Real Scientific Hemp oil, and they say it eased Harper's seizers. Penny even wrote her experiences in a blog.

Meanwhile, in Brazil, another family dealing with the same disease was struggling to find help for their daughter.

“When Anny was 45 days old she had seizers, we spent 4 years to figure out what happened,” Fischer said.

The Fischers found the blog about Harper written by Penny and their experiences with the Real Scientific Hemp oil. What they did next was  figure out how to get the hemp oil to Brazil, where all cannabis products were illegal.

“Because CBD was from cannabis, in Brazil it was completely illegal,” Fischer said. “You have to fight against the government and we changed the law in Brazil.”

Eventually, the Fischer's were able to get hemp oil legalized for patients in Brazil. While the Howard's and the Fischer's were celebrating a big win for the treatment of this disease, back in January, Harper passed away

“When we heard about it, we were surprised and sad,” Fischer said

“It was very difficult to come to terms wit the new normal, and seeing other families and seeing their children helps me step back for just a small moment and remember all the good that Harper taught us.”

It just shows how one person can make big changes in the world.