What a shame!

Tirelo Thapo, 32, is desperate to have her daughter - Tlamelo, 10, who was born with a rare genetic disorder called Pallister Killian Syndrome (PKS) - go to school where she can get the specialised care she needs.

In this way she will be able to provide for her other children. Because of the PKS, Tlamelo is blind, deaf and is unable to walk or sit up amongst a host of other health conditions. Following a stint at Mochudi Resource Centre for the Blind, from January 2011 to 2014, Tlamelo was taken back to her mother because the school was apparently not equipped enough to provide adequate care for the girl.

“I have had to quit my job at PEP Stores because she requires round-the-clock care,” the distraught mother shares. “I need help to assist with her care because I’m not working and I need to keep our bills going. Everything is just backing up. It isn’t just a physical struggle it’s a mental struggle for me”.

Following a normal pregnancy, the mother of three says Tlamelo was born naturally with adequate Apgar scores and a normal weight. “No one suspected that there was a problem,” she says. But in the months that followed her homecoming, it was evident that something was very wrong. “Her eyes seemed glazed over looking outward without focusing. She was extremely frail without any muscle strength and she could not hold her head up.”

However it’s not a tragedy that her child is disabled, she says adding, “we don’t need pity but a little bit of help will go a long way in helping us get on with our lives”.

Despite repeated efforts to get assistance from social workers in her area in Francistown, Tirelo says she gets no help at all.  “I made a request for a wheelchair in 2014,up to now I’m still waiting. In winter especially, she needs diapers, which I can’t afford,” she cries.

A social worker who requested anonymity acknowdged that Tirelo’s case is complicated to deal with because of the host of problems she has. “If it was just one disability it would be easy to take her to the appropriate school that deals with it but for now, most of the available schools don’t have the expertise to deal with a child of her needs.  The most help she can get after a thorough assessment of her needs is done is a cash component of P300”.