Carling and Colton have both been diagnosed with Late Infantile Neuronal Ceroid Lipofuscinosis (NCL). It is one of about ten variations of NCL, which are often grouped together and referred to as Batten Disease. The disorder chromosomal in nature, and both parents must be recessive carriers in order for children to have a one in four chance be affected. The disorder is degenerative in nature, and over time, affected children suffer mental impairment, worsening seizures, and progressive loss of sight, motor skills, and verbal communication. The late infantile variation of the disorder presents around age three, and has a life expectancy of nine years. Colton got stem cell brain surgery in India to attempt to combat the disorder.
For a more in-depth understanding of NCL, please visit thewinningteam.org.