She was baptized into Christ as Ella Sabine Casten.
The congregation promised to care for her.
She was welcomed into the family of God through St. Timothy Lutheran Church of Naperville, IL.
We knew nothing of SMA.
She was beautiful in her baptismal dress; her eyes wide with wonder; her temperament even and pleasing.
We knew nothing of AFO's, KAFO's, TLSO's (the various bracing devices she now wears) or how incredibly patient and bright her soul really is.
She was held and carried by us, by the clergy, by friends and family because she was so young. That's how she moved in the world--as any other baby does.
We knew nothing of micro-wheelchairs or Permobil power wheelchairs; not to mention the loads of equipment (from tiny syringes to a massive, mechanical stander) she requires to enhance her quality of life.
We were surrounded by a love that is rooted deeply in the love of Christ. The Church and its people, witnessing the ceremonial baptism of Ella, pledged to care for her.
And so...they do.
Upon learning of Ella's disease the congregation of St. Tim's has consistently fulfilled their promise to Ella and to us. They have brought an inner peace that fills us when we attend. They have brought relief and comfort, good words and deeds, prayers and consolation as we wrestle with ourselves, our God, and the meaning of it all in light of the terminal illness that has stricken our gorgeous Ella.
In efforts to provide us with love and support, parishioners gathered together and brought a fundraising event to the church to benefit Ella and her immediate and long-term care needs. The event was unlike any other we had seen before. It was a Zumba Event...led by a professional Zumba instructor and designed to bring in people to support the growing financial burden SMA has inflicted upon our family.
People of all ages attended. People of all ages "Zumba-d". People of all ages enjoyed an afternoon of fellowship and goodwill.
Thank you St. Timothy's...
