Baby Stopped Growing at 4 Months, Then Parents Got ‘Devastating’ Diagnosis
Summary
A baby named James stopped growing at four months old and was diagnosed with cystinosis, a rare genetic disease that damages organs like the kidneys and eyes. His family must manage his condition with special medicines, supplements, and frequent medical care.Key Facts
- James was born in December 2025 and had low blood sugar requiring 23 days in the NICU (neonatal intensive care unit).
- He was first diagnosed with hyperinsulinism, a condition causing too much insulin and dangerously low blood sugar.
- Doctors later found James’s kidneys were not working properly and performed genetic tests.
- The tests revealed James has cystinosis, a rare genetic disease affecting about 1 in 200,000 children.
- Cystinosis causes cystine crystals to build up in cells, harming organs like kidneys and eyes.
- Symptoms include excessive thirst, frequent urination, poor growth, vomiting, and light sensitivity.
- James takes Cystagon, a medicine that helps dissolve cystine crystals but is not a cure.
- The family faces emotional and financial challenges due to ongoing medical needs and care.
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