At a loss

[Meara]

My 2 1/2yr old daughter was diagnosed with sca 44. Does anyone else have or know of anyone who has this? Doctors can't seem to give me answers where I am from. I just feel at a loss.

[wobblybee]

Hi Meara🙂 As you’ve found there isn’t much documented yet on SCA44. Earlier this year someone did post on here who had also been diagnosed with that type. You can find his post by typing SCA44 in the search box above. You could try logging onto Facebook and searching for Pediatric Cerebellar Atrophy Support. I know there are many parents in that group who are also looking for support and answers. It’s a closed group, so you will have to join before being able to view posts 🙂 xBeryl

[Litty]

Sorry I cannot help more but I understand that it is a new one. It is so hard if babies get poorly though. Unfortunately doctors cannot always help and find out all you can and finding others in your situation may help x

[Driven1]

Check out omim.org/entry/617691