Mombasa group offers support to families of children with medical needs

Zainab was easily fatigued and breathless, even when resting. This would have been worrying in an older person, but concern over Zainab’s condition was particularly acute — she was only 2 years old. After numerous doctor’s visits and tests that took Zainab and her father far from home, they were told that she had a congenital heart defect and would need surgery. Zainab’s family led a simple life in Mombasa and did not have the kind of money needed for the surgery. Never would they have imagined that the solution to their dilemma had been conceived at a kitchen table in another part of the city.
Nine years earlier, Tanuja Walli entered that same world when her son was diagnosed with a similar heart defect. Fortunately for her, her son underwent surgery and is now a healthy 12-year-old, living a full life. During her experience, Tanuja met other families with children with congenital heart defect but soon realised that many did not have the resources to provide their children with the required healthcare. Not one to sit back, Tanuja formed the Paediatric Support Group (PSG) in 1998, at the Aga Khan Hospital in Mombasa.

Providing assistance and support to parents as well as children. Photo: Courtesy of the PSG

The whole idea was born around her kitchen table, when she and a circle of concerned friends devised a plan to support families in crisis, both emotionally and financially, regardless of race or religion. Initially, the PSG focused on all chronic conditions in children, such as congenital heart defects, asthma, cerebral palsy, Down’s syndrome and diabetes, but over time they realised that the majority of children they came across suffered from heart conditions and needed special needs support. Therefore, the Group chose to concentrate more on these.
Since 2002, 90 children have received surgery and have been given a new lease on life, thanks to contributions from numerous donors, all facilitated by the PSG. Over the past four years, with the help of Aga Khan Hospital, as well as Medical and Educational Aid to Kenya (MEAK), a team of doctors from Guy’s and St Thomas’ Hospital in the United Kingdom has come to conduct free heart clinics where an average of 100 children are assessed, a number of whom are then operated. Several children with acute cases have also been sent to India for special treatment.

A member of the medical team from the UK’s Guy’s and St Thomas’ Hospital examines a patient. Photo: Courtesy of the PSG

At present 55 children await surgery. Parents are asked to contribute what they can towards the costs while the rest is covered by donations from groups such as the Mamujee Foundation, Rotary Club, Lions Club, Plan International, Mombasa Liners, Aga Khan Hospital, the PSG members and other donors. Several Mombasa area doctors have also generously donated their time to this cause.
The PSG has also raised funds to brighten the Children’s Ward of the Aga Khan Hospital, Mombasa. With coloured wall murals, as well as a playroom stocked with toys and staffed by a recreational therapist, the Hospital is now more child-friendly.
A support group for parents of learning disabled children was also introduced in 2004. Parents meet regularly to boost each other’s morale, share experiences and hold educational talks on conditions such as dyslexia, autism and sensory integration disorder, amongst others. The group also seeks to support parents and raise awareness of special needs in Mombasa schools. This ensures that the children have access to equal educational opportunities and do not fall through the cracks.

Members of the Paediatric Support Group pose together for a photograph. Photo: Courtesy of the PSG

“Being able to give these children a new life gives us joy and we feel we have made a difference,” says Walli. “Seeing the tears of happiness in the parents’ eyes is just overwhelming, especially when they say we have been sent from God.”
Who would have thought that a casual conversation around a kitchen table could give hope and a new chance in life to so many children in Mombasa?

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