Clare’s Story

Written by Clare’s Dad

Our family has always been active, both in each other's lives, as well as in the community. That was, until November of 2024. Our daughter Clare, who had excelled at Irish dancing, climbing, and making people laugh with her sense of wacky humour, became ill. Initially thought to be a bug, she stayed home from school. Then I also became sick and bedbound. We both went to the hospital and were diagnosed - Clare with antiphospholipid syndrome (APS) which is a blood clotting disease associated with Lupus, and I with Guillame Barre Syndrome which is a neurological degenerative disorder. 

We were both hospitalized and away from the four other children (Samuel, Willem, Blaise, Dominic) and their mother (Catherine) for Christmas, New Year, and well into 2025. My wife was left alone for months to tend to all of the housework, caring for children, and shuttling back and forth to ensure Clare was taken care of at Sickkids Hospital in Toronto and I at Providence Healthcare. The stress on everyone was immense, and the fear of permanent loss was palpable. 

The social worker at Sickkids put us in touch with Sarah Tapley Foundation, who helped us all to realize that the stress and fear we were all feeling were not the end. Abby, who contacted us from the Foundation, listened and empathized. She reminded us that we weren't alone. We were reminded that we were held in the hearts of others, that we were prayed for, and we felt supported in ways that nobody else could. Because of STF, we were able to continue to see each other, to make necessary changes in the house, and to bring a semblance of happiness and normalcy to a world that was anything but.

Clare and I continue to deal with the effects of illness and the rest of the family continue to deal with the stresses resulting from that chaotic time. But there is hope once again. Thank you Sarah Tapley. Thank you Abby. And thank you to all who made that connection possible!

In deepest gratitude, 

Jason