A military family is receiving a potentially life saving drug for their daughter free of charge thanks to a Carlsbad nonprofit. NBC 7’s Omari Fleming introduces us to the brave little girl with big dreams.
Three-year-old Harlow Prado relies on a walker, as she battles an extremely rare and terminal neuro-degenerative disease.
With her birthday coming up in May, her mother Daphne Graskewicz-Prado shared a recording of her daughter’s birthday wish.
"I want my medicine in my back,” you can hear Harlow say.
“That's the kind of kid you’ve got to move mountains for," her mother said. "She so desperately wants to be up and walking."
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That's why the military family packed up six months ago and moved from Southern Illinois to Temecula, where they'd have access to a potentially lifesaving drug. It's developed by Carlsbad-based n-Lorem Foundation.
“There's nothing else in the world that is offered for a kid with this type of leukodystrophy," Harlow's mother said. "The other option is that we watch her fade away and eventually pass, and so you will do anything for your child."
When Harlow was 2 years old, an MRI showed she has a form of leukodystrophy. The disorder affects the white matter of the brain and spinal cord. Graskewicz-Prado noticed her daughter was having problems walking.
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“There was just no balance there," she said. "I knew something was wrong, and I kept being told, 'Oh, you know, she's fine, kids develop at different ages."
Thanks to their neurologist, the family of five was able to find n-Lorem Foundation in Carlsbad. The tailor-made medicine Harlow will start taking is the brainchild of Dr. Stanley Crooke, who started n-Lorem to provide medicine for extremely rare diseases like Harlow’s.
“Every family that we're involved with is suffering terribly, and every opportunity to help is a wonderful endeavor," Cooke said. "The kinds of benefit that we are seeing in so many different patients is deeply, deeply rewarding."
The foundation is providing the medicine for free, but the family is still worried. They say insurance and grants don’t cover all the costs of treatment at Rady Children's Hospital.
That’s why the family is thankful to donors who have recently helped them reach their six-figure online fundraising goal in just four days.
“I have so much hope that she's not only not going to die from this but she can potentially thrive in the way that Harlow wants to," Harlow’s mother said.
It's a gift that gets Harlow just a few steps closer to walking without help, considering her treatment is expected to start just a few weeks before her birthday.
Harlow's mom says treatment at Rady Children’s Hospital is scheduled to start in about two months.
Crooke says the little girl will have to get spinal fluid injections every three months for the rest of her life.
