Diagnosed with KCNA2 mutation
I’m Niku’s mother, writing to you from Georgia, Eastern Europe. My son is 3 years old. He has microcephaly and tetraplegia affecting all four of his limbs. He’s completely contactless meaning he cannot connect with us in the ways most children can.
We didn’t receive a diagnosis until very late. Eventually, we learned that Niku has a KCNA2 mutation. Right now, he is the only known case in our country. At this stage, we don’t know what kind of help will make a difference.
How we’re doing now
We are doing everything we can; we’ve tried every kind of therapy available to us. But so far, we haven’t seen any results. We continue because we must. We love him, and we want to believe in something more for his life.