FROM FRAGILITY TO FIRMNESS
The arrival of a new child is often a moment of celebration for a family, a time when joy fills the air and community gathers to share in the happiness. For Atupele Molesi, however, the birth of her third child, Zainab, signaled the start of unexpected and challenging journey. A journey full of emotional toll bringing her face to face with harsh realities.
“Instead of receiving support, I was met with judgment and isolation. It was a painful time and I often felt completely alone. Instead of seeing the beauty of a new life, all people saw was a child who was different. It was hard to bear” Molesi recalls with despair.
The hurt of being judged and whispered about was constant. She describes how, with every glance, she could feel the weight of people’s disapproval. “It was as though the community, which should have been a place of love and support, had turned against me,” she says.
Zainab was born with a condition affecting the growth of the skull (medically called Hydrocephalus), leaving her in pain and her future uncertain and her mother’s heart heavy with a mix of love and concern. Hydrocephalus is a rare disorder, requires both immediate and long-term medical attention, something that Molesi was determined to secure for her daughter. “I just wanted to see my daughter grow like any other child,” she says softly. I wanted her to run and play without pain and have the same opportunities as every other child.
In search of hope, Molesi reached out to organisation’s that specialize in supporting children with rare medical conditions. Though Zainab underwent surgery at Mangochi District Hospital, she still needed extensive care which included long-term physiotherapy as part of her recovery. Her journey took a positive turn when Zainab was enrolled in a programme designed to rehabilitate children with disabilities.
“When I first learned about the initiative, I felt hope in a way that I hadn’t felt in months,” Molesi says with her face brightening. “It wasn’t going to be easy but this programme offered something no one else could which was a real chance for Zainab to get the long-term care which Zainab needed.”
St John of God Hospitaller Services, with support from KinderNotHilfe (KNH), is running an Early Intervention project in Lilongwe. The project focuses on promoting and protecting the rights of children with disabilities and also provides essential support to them.
Zainab’s life began to change as the healthcare professionals from St John of God worked tirelessly to provide the necessary care that she needed. “Each child’s journey is unique but with early intervention, we can give them the support they need to thrive. Zainab has made remarkable progress. She has gained more control over her body and is becoming more independent.” says Precious Nkosi Phiri, Physiotherapist at St John of God. She further states that physiotherapy is more than just exercises. “During our physiotherapy sessions we focus on building strength, improving balance and increasing the range of motion. If a child has difficulty with fine motor skills, we use specific exercises to improve coordination and dexterity,” Phiri further elaborates.
From the very start of the Zainab’s enrolment in the programme, her progress has been noticeable. Phiri stresses the importance of parental involvement in the healing process: “We teach parents simple exercises to reinforce what we work on in the clinic. Consistency is key to making progress.” Molesi has taken on the role of Zainab’s physiotherapist at home, where the comfort and familiarity of their surroundings provide a foundation for healing. She understands the importance of patience and persistence. “The journey for her full recovery will take a long time and I have made peace with this but I also know that with my love and dedication no road is too hard to travel” she says. Zainab’s progress has been slow but certainly undeniable. “Every day, I see her becoming stronger. I never thought I would witness some of the milestones she has already achieved,” Molesi reflects with a mix of joy and disbelief.
In addition to her mother’s support, Zainab is fortunate to have Levison Kumchulesi, her stepfather, by her side. His dedication to the family is unwavering, even in the face of ridicule from their community. “I will always be there for her, no matter what others say. People may have opinions about our situation but my focus is on what is best for Zainab,” Kumchulesi asserts.
His care for Zainab goes beyond physical therapy he is deeply involved in managing her medical appointments and ensuring she continues to receive appropriate care. In the program by St John of God, the process of identifying children who need specialized care begins with careful outreach.
Ndaonga Mkandawire a medical rehabilitation technician at St John of God explains how the programme works as follows. “Through community visits, outreach clinics and engaging stakeholders such as healthcare practitioners from health centers, clinics and hospitals across Lilongwe. We also train volunteers within various communities of Lilongwe to recognize signs of disabilities in children. Whether physical, cognitive or developmental. These volunteers help us connect with families who might not be aware of the services available to them.”
‘Without the dedicated network of volunteers, many children would miss out on the vital early care that make all the difference,” says Mkandawire. For children with disabilities, every small step towards recovery is a monumental achievement. From their first independent movement to their first word, each milestone is a testament to the boundless potential within every child. Molesi sees the positive changes in Zainab every day. Finally for the dedicated physiotherapists, rehabilitation technicians, volunteers and parents working behind the scenes, there is no greater reward than witnessing a child achieve something once thought to be impossible. They say each milestone is a triumph not only for the child but for everyone involved in their journey.