6/26/2023 The Endurance We Didn't ChooseBefore Lucas was born, before he was diagnosed with two rare diseases, and before he…
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 CourageI am really tired. Mentally. Physically. Energetically. I am tired of politics and of the…
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…
