RAMONA, Calif. – As kindergarteners around San Diego County are headed back to school, one Ramona family thought they would never see the day.
Brian and Damaris Higuera’s youngest daughter Sadie has been battling a debilitating rare genetic disorder since before birth. She was having trouble forming her kidneys while in the womb.
“We found out that she most likely had Schinzel Giedion Syndrome,” said Brian.
Sadie’s struggle began the minute she entered into the world.
“At that point, I said to Sadie, ‘If you breathe for Papa I’ll do whatever I can for you,’” the emotional father said.
Sadie took the first breath and survived, but that would be the beginning of the struggle. By 3 months old, the child would suffer through 300 seizures a day.
“Some of them lasting 30 to 40 minutes,” said Brian. “It terrified us, we didn’t know what was happening.”
Prescription medications didn’t work and doctors told the Higueras there wasn’t much they could do. Brian turned to medical marijuana despite the stigma around it.
“The first thing I said, ‘No way we’re not doing something like that,’” said her mother. Then, suddenly Sadie suffered another major seizure.
“That’s when my wife said, ‘Let’s give it a shot,’” said Brian.
With the first shot, Brian saw what he called a miracle.
“I would call her Sadie and she would track me with her eyes,” said Brian. “I was dumbfounded. I was amazed after all we’d been through for 8 and half months with her.”
As the seizures came under control, doctors told the family Sadie only had months to live.
The parents continued giving Sadie hemp oil and she defied the odds. Years later, Sadie started kindergarten.
“She’s happy. She’s stable, in her house with her family and she’s going to school,” the grateful parent said.
“The first day of kindergarten, I never thought that would happen,” said Damaris, mother.
“Seeing her rolling into school in her special chair was just so cool,” Brian Higuera said.
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