A Southern California family is desperate to save the life of their 3-year-old daughter who has been diagnosed with an extremely rare disease.
In July 2023, Harlow Prado was diagnosed with a rare and terminal neurodegenerative disease called TUBB4A leukodystrophy. The disease affects only 200 children in the world.
Her family became concerned when, at 18 months, Harlow still wasn’t walking independently. An MRI revealed she had less white matter in her brain than normal and genetic testing confirmed the rare disease.
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Harlow Prado, 3, was diagnosed with a rare and terminal neurodegenerative disease called TUBB4A leukodystrophy. The disease affects only 200 children in the world. Her family is working to raise enough money for a life-saving gene therapy treatment. (Prado Family) -
Harlow Prado, 3, was diagnosed with a rare and terminal neurodegenerative disease called TUBB4A leukodystrophy. The disease affects only 200 children in the world. Her family is working to raise enough money for a life-saving gene therapy treatment. (Prado Family) -
Harlow Prado, 3, was diagnosed with a rare and terminal neurodegenerative disease called TUBB4A leukodystrophy. The disease affects only 200 children in the world. Her family is working to raise enough money for a life-saving gene therapy treatment. (Prado Family) -
Harlow Prado, 3, was diagnosed with a rare and terminal neurodegenerative disease called TUBB4A leukodystrophy. The disease affects only 200 children in the world. Her family is working to raise enough money for a life-saving gene therapy treatment. (Prado Family) -
Harlow Prado, 3, was diagnosed with a rare and terminal neurodegenerative disease called TUBB4A leukodystrophy. The disease affects only 200 children in the world. Her family is working to raise enough money for a life-saving gene therapy treatment. (Prado Family) -
Harlow Prado, 3, was diagnosed with a rare and terminal neurodegenerative disease called TUBB4A leukodystrophy. The disease affects only 200 children in the world. Her family is working to raise enough money for a life-saving gene therapy treatment. (Prado Family)
As things became bleak and her family scrambled to find a cure, they now have a chance at saving Harlow’s life with a gene therapy treatment that was developed just for her.
The drug was provided for free by the n-Lorem Foundation. However, the costs of administering the drug during the clinical trial phase are not fully covered by their health insurance.
“We had believed grants would help bridge the gap, but now, we are left with an overwhelming, unexpected financial burden — one that reaches well into six figures,” her mother, Daphne Graskewicz-Prado, wrote on a GoFundMe page to raise funds for the treatment.
In two months, Harlow is scheduled to begin treatment at Rady Hospital in San Diego. She will become the second child in the world to receive this procedure, but the price tag is steep. Her family is hoping to raise $120,000 to cover the fees.
“Without this groundbreaking treatment, this disease will take everything from Harlow,” her mother said. “First, it will steal her ability to walk, then to crawl, then to eat, then to speak. Until eventually, it will take her life.”
The FDA has already approved Harlow’s clinical trial and IND (Investigational New Drug) application. Based in Temecula, the active-duty military family is hoping they can raise enough money before treatment is scheduled to begin.
Harlow is unable to walk on her own due to the disease, but her spirits remain high. Her mother said she loves dancing with her walker and playing with her older brother and younger sister.
“I want her to not just be able to live, I want her to thrive,” her mother said. “If I do lose her, I know that, to have any peace, I had to have done absolutely everything in my power to stop it.”
A GoFundMe page to help the Prado family can be found here.
