Tsetseng Spar, Cheshire Foundation and Hanna Bee as well as other sponsors commemorated Cerebral palsy day two days before the actual day at the foundation’s premises in Mogoditshane under the theme; ‘Go green for Cerebral palsy’.
Cerebral palsy refers to a group of neurological disorders noticeable in infancy which permanently affect body movement and muscle coordination as a result of abnormal development or damage to the parts of the brain that control movement, balance, and posture as well as other motor functions including speech.
Twenty months after her bundle of joy was born, Carly Th-losio Phakis was shattered to discover her daughter Hanna has CP. Unable to find support for her child and coping mechanism, Th-losio Phakis instead found purpose and turned her anguish into a passion to help others.
In 2017, together with other mums, she founded Hanna Bee in order to raise awareness of this condition in Botswana. As part of the awareness spreading momentum, Hanna Bee partnered with Cheshire Foundation to commemorate this day together with Tsetseng Group Spar and other sponsors.
Cheshire Foundation encourages and assists disabled individuals toward independent living, with the freedom to live life their way. Welcoming stakeholders to the event, the foundation’s Rehabilitation Coordinator, Mabasa Ndikudze said although most of their clients are aged from five to 15 years, they are open to all ages.
Apart from providing rehabilitation at the centre, the foundation provides support to care givers at homes. Although they need more capacity, Ndikudze is impressed with home-based care. He warned; “Do not underestimate the family.”
Guest Speaker was none other than champion of the disabled and former coordinator of the Cheshire Foundation, Sekgabo Ramsay.
Now Executive Director of the Botswana Council of the Disabled, she stated that children have the right to grow under the care of their parents and receive services that will give them independent life.
“The right to independent living is quite crucial because if one does not acquire the necessary skills they become excluded from society.
Those that have the opportunity to come to centres like this are really lucky because they receive all the necessary services to get them fully independent in functional and life skills,” Ramsay said. Children who do not make it to such centres have a tough time in society.
Ramsay lamented that such children are hidden and excluded from society and called for moral support for families as well as government built residential institutions of care. Private Paediatrician Dr, Sarona Makhware said most kids are not diagnosed early enough because parents hold back and encouraged parents to seek a doctor’s help even at two months. “Of course there’s no paediatrician at every corner but mid-wives are trained. Come to us. Don’t hesitate,” she said.
When he brought him to the centre, Cosmos Sibanda’s son’s neck was uncontrollable and he was drooling and unable to walk on his own. The boy was born with CP. Grateful Sibanda and others were happy to share eye watering testimonies.
“It’s unexpected and not easy to cope with but you have to accept and love your child; not as a burden but a gift. Always expect progress and never give up,” Sibanda said.
The pain that parents go through manifested itself in Khumo Thuto whose child was dropped by a maid. Clearly at wits end with maids, Thuto lamented that she had to quit her job because maids do not stay long no matter how much they earn.
“It’s too painful!” Thuto started sobbing as tears welled up in her eyes. Unable to control the emotion, she sat down.
Botswana Physiotherapy Associacion Chairperson, Pauline Kusuwo said many practitioners and specialists are needed for to help combat CP effects.
Because each child needs a different type of treatment she stated that it is important to assess whether the patient needs a paediatrician, physiotherapy, neurologist or occupational therapy among others.
Kusuwo further said it is important to provide information because some people associate the condition with witch craft and called for more support for care givers.
Head of Rehabilitation at the Ministry of health and Wellness, Gaboelwe Rammekwa called for CP, which is the leading condition among disabled children, to be recognised as a health condition because it affects people’s lives and the children’s future. Rammekwa revealed that a policy was about to be approved which would allow the health sector to operate as a whole.
She stated that they would embark on several interventions aimed at improving early detection. In the past three years they have supplied specialised wheelchairs to several districts to ease the burden for care givers.
In a period of two years they expect to have supplied wheelchairs to up to 90 percent of kids and she said they were expecting another batch.
“The ministry cannot do this alone. We need everyone and we need to pull up our socks. Next financial year we will plan with Cheshire Foundation because we are behind those interested in raising awareness and providing interventions for the kids,” she said.
Spar team members dressed as clowns and stirred giggles while they painted faces. Together with other good Samaritans they interacted and took selfies with the kids.