Christmas in July: CFSA’s 2nd Johannesburg Annual Family Gathering
Christmas came early for our Johannesburg cystinosis families this year!
On Saturday, 25 July, the Cystinosis Foundation South Africa (CFSA) hosted its second Johannesburg Annual Family Gathering at the Fellowship Full Gospel Church in Randburg. The day carried a festive “Christmas in July” theme, bringing vital connection, joy, and mutual support to our unique community.
The gathering began with a deeply moving moment of silence. Together, we remembered and prayed for the two families in our network who lost a child this past year. We hold them close in our hearts and continue to honour their memories as a community.
It was a beautiful day of connection with 42 attendees, including parents, siblings, and caregivers. Gail Daniels (co-founder of CFSA) warmly welcomed two new families into the CFSA community—a group forever bonded by the shared experiences of living with a rare disease.
Pastor Mike led the day’s devotion, offering uplifting words that encouraged families to keep trusting God through the difficult and unpredictable journeys of rare disease management.
Throughout the day, conversation flowed naturally. Families leaned on one another to share personal experiences, everyday challenges, and valuable lessons learned regarding treatment compliance and medical complications.
While the adults connected, the children had a wonderful time playing with Uncle Rudy and Aunty Jo. The ultimate highlight of the day arrived with Father Christmas himself! He brought beautifully wrapped gifts for every child in attendance, sparking radiant smiles that celebrated their immense courage and resilience.
The day concluded with a shared lunch and easy conversations that carried on into the afternoon. We parted ways with full hearts, strengthened by a deep sense of belonging and hope to carry us all forward.
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