By Fred Ouma, Development Communications Coordinator, World Vision Uganda
“To find out that one child has Cerebral Palsy is a shock to your system,” said Resty, a mother of twins from Rakai district. “To find out that both of your twins have it is a cruel twist of fate. When we found out, it broke me for a bit. But, then it made me stronger. I was so determined they were going to overcome it. I dismissed all the doubt in my mind that they were never going to walk or do the things other children can do.”
Melon and Herbert, both 16, suffer from cerebral palsy caused by a brain injury at birth. But it was at 14 months when their parents noticed that there was something amiss. “They appeared to be developing more slowly than other children,” said the mother. “But, when doctors examined them they found they had Cerebral Palsy, making their legs too stiff and weak for them to stand.”
To find out that one child has cerebral palsy is a shock to your system... To find out that both of your twins have it is a cruel twist of fate.
Melon is the worst affected, she cannot move her legs properly, struggles to sit up on her own and cannot react quickly enough to stop herself from falling over.
Doctors believe a special surgery called a Selective Dorsal Rhizotomy could have enabled Melon and Herbert to move on their own. But that is asking too much of this peasantry family of eight, let alone finding specialists in Uganda to do it. “We were told some procedures could be done to help children with such conditions move on their own, but in Europe. When I heard of Europe that sealed my hopes of ever finding treatment for my children. I had to accept their fate,” said Resty.
Both Melon and Herbert suffer from stiffness and muscle spasms all over their bodies and their development is six years behind other children their age.
It is ‘a very rare thing’ to have twins who both have Cerebral Palsy, and there are noticeable differences between the pair.
I thank World Vision for the timely support. These wheelchairs are not only helping Melon and Herbert to be in control of their lives, as a mother I am relieved of the heavy burden of carrying them from one place to another.
“Melon is so stiff. She’s like a pencil and cannot talk, but is smiley and laid-back,” her mother says. Whereas Herbert is the vocal one who "does the babbling for both of them" and goes "headfirst into everything". "They are both amazing children,” Resty said. “They are not hard work – everyone says to me they must be hard work. They’re not; they’re my children. I will do everything I can to get my children to where they should be,” she said.
"Melon has to be strapped into a chair to stop her falling over but it can restrict her so much she cannot play with her brother," Resty said.
This is frustrating for her because "there’s nothing wrong with her intelligence-wise," she said.
But despite Melon and Herbert not being able to talk yet and struggling to move freely, Resty claims the twins are already a team.
They’re the kindest, most loving children ever. They both have the most infectious laugh you could ever imagine.
“Melon is our little stunner and ray of sunshine that people always wave at and makes people’s days. Herbert will go headfirst into everything, whereas Melon is the one that will grab hold of him and pull him back," says Resty.
“She is the cautious one and he’s the not so cautious one. [Although they look very similar], they are very different in personalities.
Looking for the Future Together
“No matter what people give or say, we’re just so grateful that they’re giving us the support we need – wheelchairs. These children, as they grow, they get heavier. I thank World Vision for the timely support. These wheelchairs are not only helping Melon and Herbert to be in control of their lives, as a mother I am relieved of the heavy burden of carrying them from one place to another. In their wheelchairs they can now move around freely by themselves with minimal support,” said Resty with a tone of gratitude.
Mellon and Herbert are among a total of 1,096 children since 2015, who have received the support of a wheelchair from World Vision. The wheelchairs provide hope and a fresh start for them. They are fit for purpose and designed to suit the tough African terrain, including urban and rural communities. All the way from Australia, World Vision ships bright and colourful wheelchairs to children who need them most. A third vital member of this partnership, Motivation Charitable Trust, trains local health centre staff to fit wheelchairs and ensure children are safe and happy.