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Emmalynne was 17 month old and still not walking so we dug a little deeper and found out she had hypotonia but didn’t know the reason. So she was 23 months old and still not walking so we did genetic testing and come to find out she has a SACS gene mutation that causes ARSACS. Not many people get diagnosed as young as her. So now she does walk on her own but gets tired a lot. Her legs hurt and she is on a lot of meds for her young age but she is growing and learning even though we know she can regress anytime like she has a few times. We live for the good days not the bad.
