5/31/2023 Finding Hope Again in the Shadow of RiskKatie Krawzak, fellow Blogger in Residence, recently wrote a piece about her role as a…
We Hope: A Letter to Parents from Your Palliative Care ProviderAs the parent of a child who is ill, someone has undoubtedly said to you,…
A Dose of Courage I am really tired. Mentally. Physically. Energetically. I am tired of politics and of…
A Lifelong Train RideHaving a child with a rare progressive disease is like a lifelong train ride... Every…
Parents considering a clinical trial for their child are courageous indeed.When my daughter Cameron and nephew Hayden were diagnosed with infantile Tay-Sachs in 1999, there…
Just the Gift I NeededWritten December 2018 We are rounding the 5th anniversary of Ben’s passing. It is a…