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godisnumber1 (@godisnumber1)

Cerebellar Atrophy in Children

Stroke & Cerebrovascular Diseases | Last Active: Aug 14, 2017 | Replies (27)

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@colleenyoung

@lisapraska, it must be so challenging to wait for the genomic testing to come back. Can you tell us a bit more about your son? Does he go to school? Are you able to work with his teachers to meet his special needs?

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Replies to "@lisapraska, it must be so challenging to wait for the genomic testing to come back. Can..."

He starts school this fall, he currently os in the campbell county development center.

Hi @lisapraska – I’m sorry to hear that you haven’t been able to connect with anyone with a similar diagnosis. I felt quite lost at the beginning of our journey. My son has a rare genetic anomaly. He is 11 now, but we received our genetic results at around the same age your son is. Waiting for all of the testing to come back was tough- we knew there was something wrong but we really didn’t know where to start. I didn’t know what they would find so I couldn’t really search for information. And I was really risking looking in spots that wouldn’t be helpful (or even hopeful!) because I didn’t have the full picture without those test results. Then the results came in and I was torn between “Hooray we have an answer” and “What does this MEAN?” This was accompanied by a rather overpowering need to connect with someone that had the exact same anomaly. I kept thinking that if I found someone the same, surely I would understand better. There was also a second round of testing done at that time to check to see if either myself or my husband may have passed on the wonky genes, so there was another 3 months of worry and guilt. I think the guilt hit me hard because I really hadn’t thought of inheritance before the genetic screening. I had certainly worried that I may have done something “wrong” when I was pregnant, but I hadn’t considered unknowingly passing on an altered gene or two.
Unfortunately, I cannot speak to cerebellar atrophy- but I can and do understand a need to connect with others facing similar medical issues and special needs parenting. We were unable to connect with anyone that has the exact same issues as my son (he’s the only one with his genetics) but I have found other parents with a similar constellation of symptoms. That has been life changing for us! The focus has shifted from finding all of the answers to helping my son and family live our best possible life, in a comfortable way, every single day. It has taken a while to get here, but all in all the journey has been more than worth it.
Feel free to chat any time- I’m never far away!

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