Child cerebellar atrophy

Hi all. Just wondered how your children are getting on? What was their age at diagnosis and did they find the underlying cause?

My son is 4.5. The last 3 years his been have no tests, for ataxia, nystagmus amongst other things. His very wobbly and falls.

We have just found out his brain scan shows cerebellar atrophy and my heart is broken.

The plan is now to do some mitochondrial DNA gene panel tests, and a muscle biopsy. He is already enrolled on the 100k genome study. His had chromosomes and ataxia panel which were normal. They will repeat his MRI next year to see if sent further changes and if it’s static or progressive.