"Bhavin (aged 39) was diagnosed with NBIA (PKAN) in 2012. It took us almost two years to give our questions an answer. It was extremely shocking but felt relieved on the other hand because we finally knew what was wrong. Although we felt helpless because there was nothing we could do about it. Bhavin struggles with his speech, walking, eating and dystonia; however, his strong will and smile makes things perfect. We have two wonderful boys aged 13 and 10 without who we may not have got this far, they have been our hidden pillars of strength unknowingly. Can’t thank god enough for the immense love and support we’ve had from family and friends. A big thank you to all the researchers for their time and effort. We hope that our prayers are answered soon, and a miracle is on our way."