Hydrocephalus and spina bifida (HSB) are the two most common brain conditions in children worldwide.
Every 30 seconds a baby is born with HSB. This means nearly a million babies are affected by hydrocephalus and spina bifida every year. Most of these children are born in countries of the Global South, where access to healthcare is extremely limited. Left untreated, and without proper and consistent follow-up these children face severe disabilities, and more than half die before their second birthday.
This appeal focuses on supporting aftercare for these vulnerable children while engaging the art world to join hands with others. While the primary treatment of these children is mostly covered by the hospital, follow-up, education, and awareness of early intervention are critical to the success of the treatment and prevention.
For the past five years, an independent nurse in Yangon, Thaw Ti, has been working with these children and their families from their first pre-operative visit, continuing to follow them up for return appointments and calling them at home, ensuring the kids and their families are not forgotten and receive optimal care.
Follow-up is focused on the first-year post-operative, at 1,3,6 and 12 months, with continued contact beyond. In 2025, Thaw worked with over 100 new patients and their families, while following patients from previous years. She works with an average of 10 new patients and over 40 former patients and families per month. She remains in contact with some of her patients and families from the beginning in 2020. Patients with HSB don’t only come from Yangon, but from the conflict affected areas as well.
Due to cuts in global funding the organization she previously worked with had to cease support beginning February 2026. Due to this abrupt interruption in services, we are coming along Thaw and the HSB children and their families in Myanmar to keep this critical service going. This includes the after care, family education, counselling and meeting other critical needs to ensure proper development and care.
We are currently seeking to raise funds for the short term to allow us to seek more sustainable funding. Those of us coming alongside Thaw and the children and their families of Myanmar are unpaid volunteers, so 100% of any funds raised will go to work.
If you are led to join us in supporting HSB kids as they survive and thrive, go to this fundraising link.