Story perspectives

Mother's Journey Highlights Rare Genetic Disorder in Toddler

2/17/2026

Summary

Story summary

Halo, a two-year-old from Albany, has a rare CTBP1 gene mutation that causes developmental delays and low muscle tone.
Theresa Little, Halo's mother, describes the diagnosis journey after ten months of testing.
Halo uses a feeding tube and receives physical and occupational therapy.
Geneticist Dr. Carlos Mares Beltran notes little information exists on ultra-rare diseases like Halo's.
Donation proceeds support medical studies for children with similar genetic disorders.

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Story summary

Halo, a two-year-old from Albany, has a rare CTBP1 gene mutation that causes developmental delays and low muscle tone.
Theresa Little, Halo's mother, describes the diagnosis journey after ten months of testing.
Halo uses a feeding tube and receives physical and occupational therapy.
Geneticist Dr. Carlos Mares Beltran notes little information exists on ultra-rare diseases like Halo's.
Donation proceeds support medical studies for children with similar genetic disorders.