In 2005, Erica’s fourteen month old daughter, Grace, began to show the first signs of having a hypothalamic hamartoma when her pediatrician diagnosed her with precocious puberty after finding blood in her diaper. As a result of discovering the precocious puberty many follow up tests were conducted and eventually a MRI confirmed the rare brain tumor diagnosis. As time progressed, the other symptoms (multiple seizures, hypothalamic rages, cognitive impairment) developed and worsened leading to the family reaching out to other specialists. In April 2007, Grace underwent transcallosal surgery at Barrows Neurological Institute in Phoenix, AZ. The outcome of surgery was not as the family had hoped. Grace was in PICU and a neuro-rehabilitation center for 2 months and returned home suffering with long-term hypothalamic obesity, diabetes insipidous, low thyroid, cognitive impairments and eventually seizures as hypothalamic rages returned. In December 2011, Grace passed away from suspected SUDEP (Sudden Unexpected Death in Epilepsy). Grace’s legacy lives through the continued work Erica does through Hope For Hypothalamic Hamartomas.
Erica has a degree in Mechanical Engineering and has worked for over 20 years as a Project Manager and Business Analyst in the technology sector.
In addition to being a Hope For HH Co-Founder and the current Hope For HH President, Erica is the Director of Information which includes management of the website, blog, social media and the Hope For HH Newsletter.