Your NKH story is an integral part of supporting families worldwide dealing with this condition. We all have been in the position of frantically searching for answers after diagnosis and looking to connect with others who are going through the same thing. Sharing our stories publicly could shed some much-needed light on life with (and after) NKH. So should you feel led, please use the form below to share your family's experience with NKH; no matter the outcome, your child's life matters and could give a glimmer of hope to those seeking answers.