With two truckloads of household items, her personal belonging and her four children, Elizabeth Francis stood on a pavement in Arima one night in January 2009 looking up at the sky. “God please...
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Mother seeks help for son with cerebral palsy
All she wanted was a healthy baby, but when Geanna Cunningham gave birth to her first and only child Zephiniah Hessic three years ago, a difficult delivery left her baby boy with brain damage. He was later diagnosed with ataxic cerebral palsy.
“It was really a prolonged labour and when he was delivered he was not breathing and the doctor had to resuscitate him,” said Cunningham.
It was not until Hessic was six-months-old that she realised something was wrong with him.
“He was not sitting up for himself nor was he reaching for things like a six-month-old usually does,” Cunningham said.
A worried Hessic took Zephiniah to a public hospital and was told her son had cerebral palsy. Not satisfied with the diagnosis she sought a second opinion privately but the cerebral palsy diagnosis was confirmed.
“I really did not even know what to do. I was so confused,” said the single mother.
Cunningham began to research as much as she could on the disability and how one should care for a child with cerebral palsy. Realising it was a full-time job and at most times a mother is the only one who has the patience to tend to her child suffering with the disorder, she quit her job as a cook and has since been Zephiniah's sole caretaker.
“It is really hard, although I have some support from my mother, it's not all the time she could assist me in looking after him,” said Cunningham who lives in Diego Martin.
She said sorrowfully, “Sometimes I break down because it is non-stop running with him. Anything I find out that can help him, whether it is a programme, support group or otherwise, I make myself present, but I get so tired sometimes,” she lamented.
Cunningham receives a disability grant from the Government of $850, but it is nowhere enough to cover the expenses of a child with such a disorder.
She said when the going gets really tough, she prays for a miracle for her son.
“I wish I could wake up one morning and see him normal. God knows I would give anything to see this,” she said.
She finds some solace at times in other mothers who are also caring for children with the disability. But that support group set up by the Cerebral Palsy Society of T&T is also facing many challenges as it does not have a fixed location where mothers can meet, sit and discuss the way forward.
“The president is trying her best to find a permanent place for us, but it has not been easy,” said Cunningham.
A cry for help
Cunningham is currently preoccupied with finding the money to enrol her son in the upcoming July/August vacation camp hosted by Shay's Foundation for Conductive Education. The foundation was started two years ago by Ann Marie McIntosh who lost her only child to complications associated with cerebral palsy.
It offers a parent and child group programme annually, which focuses on caring for the child, coping skills for mothers or caretakers and strategic learning and special education for children, among other activities. But Cunningham is finding it difficult to raise the $7,000 needed by June 21.
“It may seem like little money to some, but when you are not working, you are lucky to come by a $20 dollar bill, if so much. I have really been trying to raise the money. I have even written the Prime Minister and the councillor for my area, Diego Martin North, but to date I have had no response from either office,” explained Cunningham.
She said coming to the T&T Guardian to share her story was her last hope of getting some kind of help.
“I know people may not understand completely how difficult having a child with any kind of disability could be for a parent unless they themselves are faced with the situation. But it takes a lot of money to look after them because they always require special treatment that most times do not come free,” said Cunningham.
She is appealing with the public to help her raise the money for her son to participate in the camp.
“I am appealing to the public to help me raise the funds for my son who is in great need. I just want him to have if not a normal life, something close to it,” said Cunningham.
Cerebral palsy (CP) is a disorder that affects muscle tone, movement and motor skills (the ability to move in a coordinated and purposeful way). CP is usually caused by brain damage that occurs before or during a child's birth, or during the first three to five years of a child's life.
The brain damage that leads to cerebral palsy can also lead to other health issues, including vision, hearing, and speech problems, and learning disabilities.
There is no cure for CP, but treatment, therapy, special equipment, and, in some cases, surgery can help a child who is living with the condition.
The exact causes of most cases of CP are unknown, but many are the result of problems during pregnancy in which the brain is either damaged or doesn't develop normally. This can be due to infections, maternal health problems, a genetic disorder, or something else that interferes with normal brain development. Problems during labour and delivery can cause CP in some cases. but this is the exception.
The three types of CP are:
spastic cerebral palsy—causes stiffness and movement difficulties
athetoid cerebral palsy—leads to involuntary and uncontrolled movements
ataxic cerebral palsy—causes a disturbed sense of balance and depth perception
People wishing to assist three-year-old Zephiniah Hessic, can make contributions via Royal Bank to account number 100019172662889. Ensure when making the deposit you state the contribution is for Zephiniah Hessic and keep your deposit slip, as this account number is the general account number for Shay's Foundation of Conductive Education. Contact can also be made to Cunningham on 702-0554.