A four-year-old boy from Colorado is undergoing a high-risk experimental treatment for Sanfilippo syndrome type A, a rare genetic disorder often referred to as 'childhood Alzheimer's.' The disease causes Zeccai Lovato to lose previously acquired skills and memory, a progression his parents are desperately trying to halt.

Sanfilippo syndrome type A is caused by a genetic mutation that prevents the body from producing an enzyme essential for breaking down heparan sulfate. This substance accumulates in the brain and spinal cord, leading to severe neurological and physical deterioration. The condition is life-limiting, with affected individuals typically not living past adolescence or early adulthood.

Zeccai's parents, Kelsey and Marcco Lovato, have been traveling from their Colorado Springs home to Oakland, California, every two weeks for his treatment since his diagnosis at age two. He was the first person globally to receive this experimental therapy.

The treatment involves a surgically implanted device under Zeccai's scalp, with a catheter leading to a brain cavity. Through this device, doctors administer a replacement enzyme his body cannot produce. However, this invasive approach carries significant risks, including infection, meningitis, and hemorrhage, according to a fundraiser for the family.

Four-year-old Zeccai Lovato suffers from a disease often called 'childhood Alzheimer's,' as it can lead to developmental regression and loss of memory

Kelsey Lovato expressed the profound fear of losing her son, telling Fox21, "To think that he may not make it past his eighth, ninth birthday is devastating. The part that scares me the most is him forgetting who I am."

While the treatment program covers travel expenses, the frequent flights place a considerable strain on the family, requiring both parents to take time off work and manage complex schedules. They are also raising Zeccai's one-year-old sister, Elliana.

Zeccai's parents, Kelsey and Marcco Lovato, have been holding out hope that new treatments can save their son. The couple is pictured when Kelsey was pregnant with Zeccai

Zeccai's grandfather, David Lowry, organized an online fundraiser to help the family prepare financially for potential new treatments. He mentioned that FAYUVI, the first FDA-approved treatment for Sanfilippo syndrome type A, is a newer option. The cost of FAYUVI and associated medical care, travel, and follow-up is currently unknown but anticipated to be substantial.

Zeccai's parents fly from Colorado Springs to Oakland, California, every two weeks so he can undergo an experimental treatment. The family is pictured with Zeccai's little sister, Elliana

Marcco Lovato admitted his reluctance to ask for financial assistance but emphasized the family's determination to secure the best possible treatment for Zeccai, regardless of the expense. He expressed hope for his son's future, envisioning him overcoming immense challenges.

While contending with the constant medical trips for Zeccai, his parents are also raising his one-year-old sister. The siblings are pictured together