From CPN’s Jennifer Siedman, Director of Community Engagement

Families are at the heart of everything we do at CPN, and I have the distinct pleasure of interacting with many of them. This role calls me to reflect on everything I learned as a caregiver to my son Ben (Sanfilippo Syndrome) and to harness my experience to help other parents. Listening to the needs of patient disease organizations and our biotech partners in patient advocacy has expanded my lens, from my own experience to the needs of families coping with a broad range of diseases. Together, these perspectives have helped CPN be a leader in developing tools and programming to promote caregiver well-being.

And, an unexpected benefit is that witnessing other parents’ decision-making processes has given me more confidence in the choices I made during Ben’s life, lessening the regret I might feel as a bereaved parent myself.

Most recently, I have had the tremendous satisfaction of translating my years of experience as Ben’s mother into the writing and development of CPN’s new tool, the NeuroJourney Map (see Looking Ahead, page 11) which will launch later in 2023. It has been gratifying to collaborate with physician specialists to create what we hope will be a valuable resource for families confronting so many decisions in the face of so much uncertainty.

From Courageous Mom Nicole K.

My son Matthew is medically complex with several neurological disorders/diagnoses, and during one of his stays at Connecticut Children’s Medical Center one of his palliative care RNs recommended CPN as a resource. I have watched so many of the videos during the quiet hours of the night, connecting with perfect strangers who are amazing parents that inspire me to be brave, have courage, and take one day at a time. Some days are easier than others.

Matthew is my youngest of three boys. He was diagnosed with microcephaly, spastic quadriplegic cerebral palsy, polymicrogyria, west syndrome, now Lennox-Gastaut syndrome. He is non-verbal, completely non-mobile, G-tube dependent and will forever be dependent on another person for all activities of daily living (ADLS).

Because of Courageous Parents Network, I know that I am not the only mother whose heart has been shattered over and over again, as more diagnoses present themselves and continue to force Matthew to struggle and suffer daily. I am not the only mother who has cried rivers of tears for her sweet baby and who mourns the life we were “supposed” to have. I am not the only mother who would do anything for her child, anything to give him the best quality of life. It is finally sinking in that there is a strong, beautiful, community of parents, caregivers, and medical professionals who understand what this feels like. Thank you.

“CPN also helps families by providing videos and blogs that help address concerns for the whole family, whether that is for the parents, siblings, or grandparents.”