Batten Above the Rainbow

Batten Above the Rainbow Batten disease is a fatal, inherited disorder of the nervous system that typically begins in childhood. It's also known as Neuronal Ceroid Lipofuscinoses.

Kane was diagnosed with Late Infantile NCL on Dec.3,2012. He began having seizures shortly before his 4th birthday.The seizure types changed and were uncontrolled by medication over the next year.In August 2012, he began having trouble walking and by October could no longer walk. Periodically getting choked led to a swallow study in mid November. Kane aspirated into his lungs during the swallow st

udy leading to same day admission to the hospital and subsequently a feeding tube during a 2 week hospitalization. We spent Thanksgiving in the hospital. Two days after he was discharged he was diagnosed with LINCL.Kane ended his battle with Batten Disease on July 20,2014.He was 6 yrs young.Raisin Kane for Batten Disease will continue on our mission.

Address

P. O. Box 223
Taylors, SC
29687

Telephone

8649088622

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