Follow-up Visit to SMA Patients in Rural China
July 8, 2024
On July 8, 2024, our greater China team, lead by our founder Danny, embarked on a special follow-up visit to a family in a remote area of rural China, where two siblings—Iris and Mark (pseudonyms)—have been courageously battling Spinal Muscular Atrophy (SMA). The visit was a continuation of our long-term commitment to supporting rare disease patients and their families, especially those in underserved and rural communities.
Bringing Hope and Connection
Recognizing the isolation that often accompanies rare diseases like SMA, we brought gifts and tokens of care from overseas. Among these were gifts from Britain, books for both education and leisure, and heartfelt postcards filled with messages of encouragement and blessings. These postcards were particularly meaningful as they were written by participants of our previous public awareness events, reflecting a growing global community that stands in solidarity with rare disease patients.
Each postcard carried a unique message of hope, strength, and compassion—reminders that Iris and Mark, and countless others like them, are not alone in their fight. The personal nature of these messages made them all the more special, reinforcing the idea that there are people across the world who care deeply about their journey.
Addressing Educational Gaps
During our visit, it became clear that access to quality education was one of the major challenges faced by Iris and Mark. Living in a rural area with limited resources, compounded by the physical challenges posed by their SMA, they had minimal access to high-quality learning opportunities, which is a crucial part of their overall development.
Determined to make a tangible difference in their lives, we at Sails of Hope took immediate action. Understanding their desire for knowledge and growth, we organized a special program where our members who are also students from some of the world’s leading universities—Oxford, Cambridge, Ivy League schools, and Imperial College London—volunteered to offer free online tutoring to Iris and Mark.
This initiative provides them with personalized lessons in English, Math, and Science, giving them access to the same educational standards as students in major cities around the world. It also serves as a way for these children to interact with bright young minds who are deeply committed to not only their education but also their emotional well-being.
As we look to the future, we are reminded of the importance of building bridges between people—whether through education, encouragement, or simply showing up to let families like Iris and Mark’s know that they are not alone.
