What is Leigh syndrome

The Gift of the Ladybug is inspired by our son TJ who passed away from Leigh syndrome at 14 months of age.

Leigh syndrome is a rare inherited degenerative neurological condition that affects the central nervous system. It usually begins in infants between the ages of three months and two years. Rarely, it occurs in teenagers and adults. Signs and symptoms usually progress rapidly. The earliest signs may be poor sucking ability, and the loss of head control and motor skills. These symptoms may be accompanied by loss of appetite, vomiting, irritability, continuous crying, and seizures.

As the disorder progresses, symptoms may also include generalized weakness, lack of muscle tone, and episodes of lactic acidosis, which can lead to impairment of respiratory and kidney function. There are several different gene mutations that can cause this condition.

This condition is extremely rare and currently has no cure or effective treatment.


National Institutes of Health, Offices of Rare Diseases Research