"We wish for both of our sons to be educated"

Since Sai Kyaw was just 3 months old, he experienced his first epileptic seizure, causing him to briefly lose consciousness. This event significantly impacted his developmental progress, and to this day, his verbal abilities remain limited to uttering just one word that holds meaning: "Baba," a call to his father.

Despite his young age, he continues to suffer from seizures every few months, prompting his family to mobilize quickly in times of crisis. When his condition worsens, they must turn to their neighbours for assistance, often resorting to borrowing money to cover the costs of transportation. Their journey to the clinic in Taunggyi, by both boat and car, alone incurs expenses of at least 50,000 kyats.   

Despite their enduring love and dedication, Myo Zaw Than and Khine Zar Win find themselves burdened by years of accumulated debt from their disabled son's ongoing medical expenses. Myo Zaw Than, working as a daily-wage labourer, earns a modest income of around 5,000 to 6,000 kyats per day by labouring on other people's floating farms around the Inle Lake. Meanwhile, Khine Zar Win manages the household duties, cooking for the family, and tending to the needs of their children. Together, they navigate the financial challenges with unwavering determination, striving to provide the best care possible for their son despite their limited means.

“Even though we love our son endlessly, the reality is tough,” said Khine Zaw Win, her eyes revealing the daily struggle she endures. “Our debt from his medical expenses is a constant weight on us. My husband works hard every day, earning just enough, while I manage the household and look after our children. But we keep pushing forward, determined to give our son the best care we can, no matter what," her voice resolute in reaffirming her resilience.

In her precious moments of free time, Khine Zar Win diligently rolls traditional cheroots, earning a meagre 5 kyats per cheroot. Despite the modest earnings, she perseveres, rolling up to 400-500 cheroots each day, which amounts to 2000-2500 kyats, providing a much-needed supplement to their income.

While their older son, Kyal Sone Htet, 13, diligently attends high school, the family faces a difficult decision regarding their younger son, Sai Kyaw. Due to his inability to independently tend to his personal needs, they have reluctantly refrained from sending him to school, prioritizing his care and well-being above all else.

"Facing the harsh reality, we've made the difficult choice for Sai Kyaw's well-being. Though it pains us to see him miss out on school, prioritizing his care is paramount. It's a decision rooted in love and necessity, one we make with heavy hearts but unwavering resolve”, said Khine Zaw Win with teary eyes.

In July 2023, a neighbour informed the family about a visit from a UNICEF team to their village aimed at registering vulnerable families with children living with disabilities. "At first, I wasn't sure what to expect, but I decided to go with my son," the mother recalls. "The UNICEF team explained the disability support programme and requested details about my son, including his age, symptoms, and condition. They meticulously recorded his information using a mobile tablet."

About three months later, Sai Kyaw's family received a phone call from the project staff followed by a text message with instructions on how to receive the cash grant. "Since October 2023, we started receiving 42,000 kyats per month from UNICEF, for a total of six months now," the father, Myo Zaw Than tells, adding that they had not received any form of support in the past. "We were filled with joy and relief knowing that our son would receive this support. It's not just about the financial assistance; we now feel a sense of belonging within a community. Being in touch with other families facing similar circumstances nearby has been invaluable to us." 

The parents used the initial funds from UNICEF to send Sai Kyaw to a specialist clinic in Taunggyi. When asked about their hopes for their sons' future, Myo Zaw Than replied, "While his brother Kyal Sone Htet dreams of becoming an engineer, our wish for Sai Kyaw is simply to keep him close so we can care for him when he's sick." He continued, "Ultimately, our deepest hope is for both of our sons to receive an education." 

The family was among 25,500 individuals screened for disability by UNICEF teams across vulnerable and conflict-affected areas, including those that are hard to reach, in 2023. Through this initiative, 2,511 households, including theirs, received bi-monthly disability allowances, offering critical support to 2,611 children living with disabilities and their 9,748 caregivers. The programme also facilitated peer support initiatives, connecting families facing similar situations within their communities, thus creating a vital network of support and solidarity.