Save Harlow - Help Her Access Life-Saving Gene Therapy

Our family is begging for your help to save our precious three-year-old daughter, Harlow. We have been given a miraculous chance—thanks to the n-Lorem Foundation, a life-saving gene therapy has been developed just for her. This could be the answer to our prayers, the chance to stop this devastating disease in its tracks.

But we are facing a heartbreaking reality. While the drug itself is provided for free by this extraordinary non-profit, the costs of administering it during the clinical trial phase are not fully covered by 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.

We are running out of time. In just sixty days, Harlow is scheduled to begin treatment at Rady Hospital in San Diego, and we simply cannot do this alone. We are desperate. We need your help.

The FDA has approved Harlow’s clinical trial and IND (Investigational New Drug) application. Everything is in place except the financial means to make this happen. As an active-duty military family with three little ones, we uprooted our entire lives to California to give our daughter this chance. But now, we are at the final hurdle, and we cannot cross it without you.

Without this groundbreaking treatment, this disease will take everything from Harlow. First, it will steal her ability to walk, then to crawl, then to eat, then to speak—until, eventually, it will take her life. I cannot, I will not, sit back and watch her light fade away. I cannot lose her.

Who is Harlow?

Harlow was diagnosed in July 2023 with TUBB4A leukodystrophy, a rare and terminal neurodegenerative disease. We started searching for answers when, at 18 months, she still wasn’t walking independently. An MRI showed she had less white matter in her brain than normal, and genetic testing confirmed our worst fear—TUBB4A-related leukodystrophy.

Right now, the only limitation this disease has placed on her is that she cannot walk on her own—but she doesn’t let that stop her. She cruises and dances with her posterior walker, lighting up the world with her feisty, fearless spirit. She is sharp, funny, and overflowing with love. She adores her younger sister, Hope, and her big brother, Henry. She loves everything pink, the beach, animals, and giving the most heartfelt hugs that remind you—on even the darkest days—that pure goodness still exists.

To know Harlow is to love her. And to love her is to fight for her.

Please, we are asking with everything we have—help us save her. Share her story, donate if you can, and be part of the miracle that will let Harlow keep dancing, laughing, and living the full life she deserves.

With hope and all the love in our hearts,

Daphne and Luis