A Southern California Family’s Desperate Quest to Save Their 3-Year-Old Daughter’s Life
A Rare and Terminal Disease: TUBB4A Leukodystrophy
In July 2023, Harlow Prado was diagnosed with a rare and terminal neurodegenerative disease called TUBB4A leukodystrophy. This devastating condition affects only 200 children in the world, and there is currently no cure.
A Late Diagnosis and a Struggle to Find a Cure
At 18 months, Harlow was still not walking independently, and an MRI revealed that she had less white matter in her brain than normal. Genetic testing confirmed the rare disease. Her family was left with a sense of hopelessness, as they scrambled to find a cure for Harlow’s progressive condition.
A Breakthrough in Treatment: Gene Therapy
Recently, Harlow’s family has been given a chance to save her life with a gene therapy treatment that was developed specifically for her. The n-Lorem Foundation has provided the drug for free, but the costs of administering the treatment during the clinical trial phase are not fully covered by their health insurance.
A Financial Burden: Raising Funds for Treatment
The Prado family is facing an overwhelming financial burden, with costs reaching into the six figures. They have set up a GoFundMe page to raise $120,000 to cover the fees for Harlow’s treatment at Rady Hospital in San Diego. This is a steep price tag, but Harlow’s family is determined to do everything in their power to save her life.
A Mother’s Plea: Saving Harlow’s Life
Harlow’s mother, Daphne Graskewicz-Prado, is pleading with the public to help her family raise the necessary funds. “I want her to not just be able to live, I want her to thrive,” she 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.”
FAQs
* What is TUBB4A leukodystrophy?
+ A rare and terminal neurodegenerative disease that affects only 200 children in the world.
* What is the current treatment option for Harlow?
+ A gene therapy treatment that was developed specifically for her, provided for free by the n-Lorem Foundation.
* How much money does the family need to raise?
+ $120,000 to cover the costs of administering the treatment during the clinical trial phase.
* What is the goal of the GoFundMe page?
+ To raise the necessary funds to cover the costs of Harlow’s treatment and ensure her survival.
Conclusion
Harlow’s story is a heart-wrenching reminder of the devastating effects of rare diseases and the financial burden that families face when seeking treatment. Her family’s determination to save her life is an inspiration, and we hope that their story will raise awareness and support for those affected by rare diseases.
