Megan is a mentor for parents caring for a child with neurological conditions, epilepsy and rare diseases, as well as for those preparing for or grieving the loss of a child. She also offers mentorship related to palliative and hospice care services, and has experience working with charitable organizations.
My son Corwyn was born with a rare brain malformation, which had a catastrophic effect on his health. He had many complications from epilepsy to regular occurrences of pneumonia and was unable to walk, talk or eat. Essentially, there was a pediatric intensive care unit in our home.
Over years of caring for Corwyn, I realized how isolating the experience was. While many charitable organizations bring support to the hospital, families with medically complex children provide most of the health care at home.
After Corwyn passed away at home in 2016, I was inspired to bring uplifting support to medically fragile children and their families. I created Rays for Rare
, a non-diagnosis-specific organization that shows up at the homes of medically complex children and their families to provide practical support. Rays for Rare also hosts events for these kids and families to build community and supportive relationships.
I also advocate for children and families facing rare diseases. There are more than 7,000! It doesn't matter exactly what the diagnosis is, the journey is similar. I have found this population to be the most underserved in our curative culture and I am proud to represent these families to advocate for pediatric palliative care, hospice and better policies.
I look forward to walking alongside others on what can be an isolating journey.