About This Blog
Stellan was born on February 22, 2012, about ten days late, but from as far as anyone could tell, completely healthy.
But developmental delays led us to get a brain MRI when he was six months old, which revealed a rare congenital brain malformation called Pachygyria, which is on the Lissencephaly spectrum. In layman’s terms, Stellan doesn’t have enough folds on the surface of his brain, and his case is particularly rare because of the area of the brain that is affected.
There is no cure for his condition, though we are hoping that extensive physical, occupational, and speech/feeding therapy will enable him to eventually walk, talk, and feed himself – the certainty of which is all unknown at this point.
Genetic testing for the most common causes revealed nothing – all the genes tested were completely normal. We are now awaiting the results from a second phase of testing in the hope that we will eventually understand more about Stellan’s condition, his prognosis, and our options for our family in the future.
In the meantime, Stellan is developing and growing in his own time, and every smile melts our hearts and each tiny bit of progress is celebrated as a major victory. While he’s certainly behind developmentally, he’s working hard to catch up, and we are doing everything in our power to give him the best possible chance at life.
We have created this site to keep family and friends updated on Stellan’s progress, to share our experience, and to connect with other families with special kids like ours.
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