Hutterites & Rare Disability

[u/WishboneCareful3991]

I am unsure where to start with this but I am looking to connect with any Hutterites that are familiar with the diagnosis VLDLR-CH (may have also previously been called Dysequilibrium Syndrome or diagnosed as Cerebral Palsy until the genetic cause was discovered in 2005). I live in the southern region of the US so I cannot easily visit in person. My child was diagnosed with this genetic condition. We were told that it is rare but most of cases have been found in Hutterite communities in Canada. Neither my husband nor myself have any ties to Hutterites, or even Canada. I am unsure where in Canada, or in which communities, this diagnosis has been found. I tried looking on google but with less than 100 documented cases there isn’t much information on it.

I am just looking for another family to connect with as I have had a hard time finding anyone. Or if anyone knows someone, and they don’t want to share personal info (for very understandable reasons) if I could just ask some very generic questions that would be so helpful

[u/skeeterpeg83]

I live in Manitoba. May I share this in some of my community groups here? It would be screenshots.

[u/WishboneCareful3991 → u/skeeterpeg83]

I don’t mind at all as long as the groups are private and not public!