Nkosilathi Sibanda, Features Correspondent
WHEN Mrs Siyanda Ndlovu was set to receive a gift of a school backpack full of goodies meant for her daughter, she refused to accept it.
Tearful, she was, seeing her only daughter Ashley, being given what many children of her age pray to have in these difficult economic times. The bag of school stationery and toys meant nothing for her daughter who was born with a disability.
Ashely’s upper and lower limbs are deformed. She was born with a rare condition known as spina bifida, which occurs when a developing baby’s spinal cord fails to develop or close properly while in the womb.
Mrs Ndlovu was told by doctors that her daughter may never be able to walk. Ashley is 11 years old.
Doctors in Bulawayo say the condition occurs during the early stages of pregnancy and is a likely lifelong condition that affects the cognitive, mobility, urinary and bowel activities. The Zimbabwe Association of Neurological Surgeons define spina bifida as a birth defect that involves the spine.
“When babies have spina bifida, the bones of the spine don’t form normally. As a result, these babies have an opening in their skin in the middle or lower part of the back.
“Spina bifida leads to different problems. The exact problems will depend on your child’s individual situation. But in general, spina bifida can cause weakness of the legs, or being unable to move,” the doctors say.
A visit to Mrs Ndlovu’s residence at Njube suburb in early January by a Netherlands non-governmental organisation, Go Sport Foundation, was enough to reveal the severity of life lived by children with spina bifida.
It is one of tribulation that no man can tell but wait to be told by parents and guardians who take care of the kids.
“Ashley cannot do it on her own. I have to help her in the toilet, feed and clothe her. Every minute she needs my attention,” said Mrs Ndlovu.
Giving birth to a child who will grow up not being able to play like any other child in the neighbourhood has left many parents mentally scarred. Living off handouts and spending hours on home-based care routines best describes a life of a mother like Mrs Ndlovu.
Stigma and discrimination from family and the community is what parents with children born with spina bifida endure for a lifetime.
The Covid-19-induced lockdown has made living a hell.
Go Sport Foundation’s country team is currently on a drive to assist children living with spina bifida in the city of Bulawayo.
The initiative dubbed “Target 50”, is aimed at reaching out to 50 kids in need of assistance in the city.
Beneficiaries were asked to write motivational letters on their dreams and aspirations.
While assisting children affected by spina bifida, it bore down as a painful reminder that community awareness has to be stepped up for people to understand and appreciate the needs of children under this condition.
The organisation’s country representative Miss Sibonokuhle Moyo said upon visiting Mrs Ndlovu and her daughter, they were touched.
“That was an inspiring moment of sheer selflessness by Mrs Ndlovu. We gave her daughter a present of a school satchel but she refused.
“Instead, she was honest enough to say thank you and advise that her daughter won’t be able to use it. She said we would rather give the satchel to another child who needs it,” said Miss Moyo.
“We were touched. So we bought the child diapers, lotions and washing soap.”
So far the organisation has helped over 50 children living with disability as part of its social responsibility.
“It is not every day that members of society get to think about children who live with such a serious condition. “We endeavour to give the children a backpack, a raincoat and personal motivational letters. It is all to do with keeping them motivated in these trying times,” said Miss Moyo.
The disability reach out programme was a turning point as it left an indelible effect on as many residents in Njube, Entumbane, Nkulumane, Magwegwe and Lobengula suburbs.
The generosity toward spina bifida cascaded to as far as Mawabeni in Matabeleland south.
“Many parents who gave birth to children with spina bifida came out and told of their daily pain. They were seeking assistance.”
It has been a norm, left untold of parents who hide children with disability from the public eye.
Compounded by shame and stigma, parents shy away, Miss Moyo understands.
Part of the shame has emanated from fly-by- night organisations who fail to honour promises to help children living with disability.
“It’s pathetic to note from many parents that there are organisations and people that always come to them promising Heaven on earth to their needy kids. They never come back.
“For us, it became a challenge as some parents did not want to open up about their kids and challenges as they thought we were one of those crooks.”
Mrs Ndlovu was at a loss for words when asked to tell of her child’s life since birth. It took a neighbour, Mr Elias Mboni to admit that the session with Go Sport Foundation was an eye opener.
“They brought confidence to these kids who have lived to try and understand why they are disabled. What we saw and learned as residents was that the children are friendly and filled with gratitude,” he said.
Miss Moyo recalled that on a visit to Nkulumane, a young boy affected by spina bifida had to stand up and walk, much to the surprise of her parents and neighbours.
“There was a boy named Joseph Nyama, who apparently, according to those who stay with him, was always reluctant to walk on his own. But, the day we visited to give him a gift from the Go Sport Foundation, he stood up and walked using his aid. It was more like showing off what he can do. It was a shocking moment.”
Not all children affected by spina bifida have reliable guardians to fend for their needs.
Some are orphans and live in Government and private shelters all their lives.
“A serious lack of food, sanitary ware is affecting most of the children. Some need wheelchairs, walking rings, clothing, medication, uniform, speech therapy, physiotherapy. Most stay with grannies or foster parents. Parents need empowerment so they can take care of the kids,” said Miss Moyo.
She said owing to the Covid-19 lockdown, the reach out initiative failed to reach as many children as they would have wanted.
“Some of these kids don’t go to school due to physical challenges. We are asking for more helpers, donors and well-wishers to throw in helping hands for these kids.
“The drive will continue soon after lockdown as some parcels couldn’t reach the people because of lockdowns. We were doing door-to-door deliveries as gatherings are banned, but hopefully as the year progresses, we will make a difference.”