In October of 2009, Dakota was diagnosed with Wolman’s disease. Wolman’s disease belongs to a group of diseases known as Lysosomal Storage Disorders and is a rare genetic disorder caused by a deficiency of an enzyme known as lysosomal acid lipase (LAL or LIPA). This enzyme is necessary to break down certain lipids inside the cells.
When Dakota was diagnosed, there was simply one awful paragraph of information to educate physicians and patients about this rare disease. The only known treatment for Wolman’s was a bone marrow transplant. Unfortunately, Wolman’s disease prevents the body from metabolizing nutrition and Dakota was never healthy enough to receive the transplant he needed to save his life.
On December 11, 2009, we rocked Dakota to sleep for the very last time. I will never be the same and I am determined to change this journey for other children and their families facing rare and genetic diseases.
I love you always Kota Bear!