Texas family is racing against time to save their baby -- and the cure may depend on raising $3 million.

A Texas family is racing against time to save Everett Blomstrom, a baby in Austin facing an ultra-rare HK1 enzyme disease that experts say may affect fewer than 50 people worldwide. Everett was born at 31 weeks and spent 143 days in the hospital before diagnosis, and he now endures daily seizures and breathing struggles, supported by a feeding tube and constant monitoring after multiple ER visits. The family aims to raise $3 million for an experimental therapy. HK1 disease keeps the enzyme in an on state, triggering lactic acid buildup and brain damage, with potential for childhood dementia and no current cure. Doctors describe Everett’s brain like a car engine revving at 10,000 RPM, underscoring the urgency. Rare Labs, part of AlphaRose Therapeutics, develops bespoke preclinical therapies for genetic diseases often ignored by big pharma. Everett’s Dell Children’s physician connected the family to Rare Labs, and his mother moved from Minnesota to Texas to pursue treatment. Success hinges on securing funding and navigating regulatory steps for a personalized, experimental option.