A mother to a child with a rare condition discusses palliative care programs and how they’ve impacted her family. 

Louisa Stringer, a certified caregiving consultant, shares the benefits of journaling for caregivers facing the uncertainties of rare disease.

In this journal entry, Laura Will shares her emotional experience in returning to the MRI suite where, in 2020, her family’s life ‘would never be the same.’

In wishing our rare community a happy Rare Disease Day, discover the empowerment and uniqueness that lies behind the word ‘rare,’ leading Laura Will to readily call herself a ‘rare mom.’

I can recall the sunny, white-walled classroom, on the upper west side of New York City, where I first heard the medical term, “Failure to thrive.” I was a student, working towards a Master’s Degree in Nursing, reviewing diagnostic criteria of various gastrointestinal conditions…

Read a personal perspective of a mother raising both well and medically-complex young children. Learn about the impact a medically-complex sibling can have on the family dynamic, and access resources that may support the well child in exploring their emotions.

A poem to rare caregivers, by Laura Will

Research shows that rates of depression and anxiety are elevated among parents and caregivers of children with complex care needs. This is no mystery. I see many contributing factors: grief, chronic stress, poor sleep, caregiving burden, potential loss of work to care for the child, financial stress, social isolation, and spousal relationship problems. Which of these factors rings true for you?

Discover how humor can be an incredible tool for protecting, connecting, and emboldening caregivers in many of their dark and difficult moments.

In our family, the love is infinite and the joy is absolute. In many ways we are like any other family; however, as we navigate this decision to have another biological child, the math is painfully different. I feel overwhelmed by uncertainty, the possibility of genetic errors, and the fragility of life.