The Southern California family is desperate to save the life of their 3-year-old daughter, diagnosed with a very rare disease.
In July 2023, Harlow Prado was diagnosed with a rare, terminal neurodegenerative disease called Tubb4a leukocytosis. The disease affects only 200 children worldwide.
Her family became concerned when Harlow was still not walking independently at 18 months. MRI revealed that she had less white matter in her brain than usual, and genetic testing confirmed a rare disease.
Three-year-old Harlow Prado has been diagnosed with a rare, terminal neurodegenerative disease called TUBB4A leukocytosis. The disease affects only 200 children worldwide. Her family works to raise enough funds for life-saving gene therapy treatments. (Prado Family) 3-year-old Harlow Prado has been diagnosed with a rare, terminal neurodegenerative disease called TUBB4A leukotrophytosis. The disease affects only 200 children worldwide. Her family works to raise enough funds for life-saving gene therapy treatments. (Prado Family) 3-year-old Harlow Prado has been diagnosed with a rare, terminal neurodegenerative disease called TUBB4A leukotrophytosis. The disease affects only 200 children worldwide. Her family works to raise enough funds for life-saving gene therapy treatments. (Prado Family) 3-year-old Harlow Prado has been diagnosed with a rare, terminal neurodegenerative disease called TUBB4A leukotrophy. This disease affects only 200 children around the world. Her family works to raise enough funds for life-saving gene therapy treatments. (Prado Family) 3-year-old Harlow Prado has been diagnosed with a rare, terminal neurodegenerative disease called TUBB4A leukotrophytosis. The disease affects only 200 children worldwide. Her family works to raise enough funds for life-saving gene therapy treatments. (Prado Family) 3-year-old Harlow Prado has been diagnosed with a rare, terminal neurodegenerative disease called TUBB4A leukotrophy. The disease affects only 200 children worldwide. Her family works to raise enough funds for life-saving gene therapy treatments. (Prado family)
As things get dark and her family scrambled to find a cure, they now have the opportunity to save Harlow’s life with gene therapy developed just for her.
This drug was provided free of charge by the N-Lorem Foundation. However, the cost of administering drugs during the clinical trial phase is not fully covered by health insurance.
“We believed grants would help fill the gap, but now we are left with an overwhelming and unexpected financial burden: for treatment.
In two months, Harlow will begin treatment at Rady Hospital in San Diego. She will be the second child in the world to receive this procedure, but the price tag is steep. Her family hopes to raise $120,000 to cover the fee.
“Without this groundbreaking treatment, this disease takes everything from Harlow,” her mother said. “First, it steals her abilities, walks, then craves, then eats, and speaks. In the end, it will take her life.”
The FDA has already approved Harlow’s clinical trials and IND (research new drug) application. Active military families based in Temecula hope to be able to raise enough money before treatment begins.
Harlow is unable to walk on her own due to illness, but her spirit remains high. Her mother said she loves dancing with pedestrians and playing with her brother and sister.
“I want her to not only live, I want her to flourish,” her mother said. “If I had lost her, I know that in order to have peace, I would have absolutely had to do everything in my power to stop it.”
The GoFundMe page supporting the Prado family can be found here.
Source link
