FAQ: So, it's genetic?

One more FAQ that we get often is "It's genetic?" Yes. Batten disease is genetic. In this case, it is known as autosomal recessive, meaning both Jon and I have to be a carrier of the gene for any of our children to be affected. If you're like me, and have a hard time remembering your high school biology class, here is a handy diagram: You get half of your genes from Mom and half from Dad. Jon and I are both carriers for CLN3 Batten Disease. So, we have one good CLN3 gene, and one bad CLN3 gene. But, because we still have one good CLN3 gene, our bodies function as they should because they rely on the backup copy- the good gene. In the case of CLN3 Batten Disease, Jon and I are each act


I recently went LIVE on the Rare Sisters FaceBook Page to answer some FAQ's that we get. Here it is in the written form. How are the Girls? In a lot of ways, they are still just our lively little girls. They are sisters, and they both play and fight like sisters. Some of the biggest struggles and notable changes because of Batten are affecting Cecilia. Her vision is declining rapidly right now. We can tell that her sight is limited. We see her running into things and people often. She is much more cautious in unfamiliar environments, and she watches shows with the iPad pressed up to her nose. Behaviorally, we have seen a lot of changes for Cecilia. We have experienced a lot of tempe

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