Erin is a mom of 3. Her oldest child, RJ, has ONH. He is 16 years old. He has no light perception, absent seizures, panhypopituitarism, global developmental delays, low muscle tone, and some orthopedic issues. Erin was just shy of 22 when RJ entered this world, but quickly devoted her time to learning about his conditions and development. When RJ was almost 2, Erin gave birth to her second child, a healthy baby girl named Isabella. RJ had been regressing since he turned 1 and was diagnosed with absent seizures at 2 ½. After this, RJ had a series of adrenal crises that landed him in the PICU multiple times. It was during this time that Erin decided to return to school in pursuit of a nursing degree. It took several years, but Erin became a Registered Nurse in 2014. Erin had initially planned to work in pediatrics because it felt natural, but she found herself in a divorce soon after she graduated and obtained the first position she could find. Erin’s nursing journey has taken her to the opposite end of the life cycle and she now works in hospice. Erin enjoys this work because she is able to support the entire family as she had wanted to do in pediatrics. RJ and Isabella’s dad passed away of cancer in 2019. Erin now lives with her boyfriend, their daughter (Ava) who is 4, RJ, Isabella, and lots of animals! Besides the nursing knowledge, Erin has volunteered and worked for the local family resource center for children with special needs in an advocacy and fundraising capacity. She has also helped support parents for many years on the ONH Facebook page.