Elijah's Victory
Living with Neuronal Ceroid Lipofuscinosis
Type II (Late Infantile Batten Disease)
Type II (Late Infantile Batten Disease)
This day, 5 years ago, in 2011 we received Elijah's diagnosis of Batten Disease. The geneticist called that day to tell us that everything was consistent with Batten Disease and we had one more test to confirm the type, which turned out to be Late Infantile. We were lost and confused, scared and worried. With the diagnosis we thought our time with Elijah would be extremely short, less than a year because he was deteriorating so quickly. Five years later almost everything has been taken from him, his sight, his personality, his ability to eat and move, but he's still with us. Every day is a struggle for him to keep breathing, but he does it, he's so strong and full of fight and life. We have been blessed with these years, all the people we have met and friends we've made through Elijah.
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