6 Years Old | Indonesia
4 years old
The process of getting this diagnosis is not easy. The first time I suspected that she was not okay was when she started to stop with her growth. She lost her balance often fell and what was clear was that she didn’t stop crying, like something she felt but she couldn’t explain. We started taking her to the hospital to meet with a pediatric neurologist. For the first time our daughter did a lot of MRI, CT Scan, X-Ray and blood tests. Initially the doctor did not get an answer, only that her atrophic cerebellum was shrinking. From there the doctors work hard every year. We do blood tests and genetic tests. Finally 2019 our daughter was diagnosed with INAD
The impact on our daughter was that she started to lose her smile slowly. At first she was a cheerful child, she was active and smart. She can do anything but once this disorder appeared it changed our lives and our children too. Our daughter is starting to lose control over her body she is starting to have a hard time standing on all fours, doing any lifting activities it becomes a tough thing. Her muscles started to weaken, she started having trouble eating, swallowing, talking even. Now she’s starting to have trouble breathing. Our daughter currently can only sleep and can’t even move much. But our daughter is an amazingly strong child she is able to endure the struggle to make all our fears and worries disappear. We will fight together with other INAD children and parents.
Dance, listen to music, watch youtube, and sing
Her favorite food is strawberries, oranges, yogurt and pudding
All children’s fairy tale books
Don’t pity, but give love
I just want the world to know that this disease has really taken our lives. It is very difficult for us to adapt and adjust everything. The struggle of these children is something extraordinary. With all their limitations, they are able to fight in their own way. I am very proud to have a child with INAD because she has given me proof that struggle is limitless.
I’m very happy with my life right now. I have a big family who loves us and supports us in Indonesia and in Japan.