A young girl named Harlow Prado, diagnosed with a rare and terminal neurodegenerative disease, is receiving experimental treatment in California. Her family moved from Illinois to Temecula to access this potentially lifesaving drug developed by the n-Lorem Foundation. Despite the challenges and financial burdens, Harlow's family remains hopeful for her future.
Three-year-old Harlow Prado relies on a walker as she battles an extremely rare and terminal neurodegenerative disease. With her birthday approaching in May, her mother Daphne Graskewicz-Prado shared a recording of her daughter’s heartfelt birthday wish. “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.
” 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 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 revealed she has a form of leukodystrophy, a disorder that affects the white matter of the brain and spinal cord. Graskewicz-Prado had noticed her daughter was experiencing difficulties walking. “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 connect with n-Lorem Foundation in Carlsbad. The tailor-made medicine Harlow will start taking is the brainchild of Dr. Stanley Crooke, who founded 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 grappling with financial concerns. They explain that insurance and grants don’t cover all the treatment costs at Rady Children's Hospital. This is why the family expresses gratitude towards donors who 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 brings Harlow a few steps closer to walking without assistance, considering her treatment is expected to begin just a few weeks before her birthday. Crooke states that the little girl will have to receive spinal fluid injections every three months for the rest of her life.
Leukodystrophy Rare Disease Experimental Treatment N-Lorem Foundation California Hope Fundraising
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