By Victoria Howard
My sister was born on June 1st 2011 and was showing no signs of any delay up until 6 months of age when she had her first seizure. She got diagnosed with epilepsy before the age of 1 and then found out she had microcephaly. She can eat normal and claps a lot! She is a very happy child with an amazing temperament. My sister is very determined for what she wants and is very loving. She was seeking therapy in Toronto to be able to walk for around 5 years and she started walking right after the five year mark. She is still non verbal but is in school and they are working on it. The doctors thought she would never be able to walk but it was a miracle she did. The neural metabolic specialist did not know much about OCNDS and said we would have to do more research…so here I am trying to connect with more families. I am so happy I am not alone in this journey. It has been hard but I am so grateful for my little sister.