A mother's struggle with 11-y-o daughter stricken with cerebral palsy
Come December, Jeffnia Hartley will be 11 years old. She won't be able to celebrate her birthday. She never has. The harsh reality is that she won't be able to do anything at all. That's how she lives because of the neurological disorder cerebral palsy, which has afflicted her from birth.
Cerebral palsy is a condition marked by weakened muscle coordination and other disabilities caused by damage to the brain before or at birth.
Affectionately called Shum Shum by her mother Karen Harvey, the little girl requires constant attention and poses a challenge for her mom, who has to find a balance between trying to make a living and caring for her daughter.
"I need help for her. She can't do anything for herself," Harvey told Family & Religion as she sat by her stall at the front of the Ocho Rios Market on Tuesday, Jeffnia on her lap, with the empty stroller beside her.
"The most help I need is somewhere proper to live wid har. Mi nuh know wha fi duh," she added, frustration becoming evident.
Harvey and Shum Shum live alone in a house without electricit and running water.
And it's not that Harvey hasn't tried to get help.
The last time, in 2014, she made the trip from Ocho Rios to the Ministry of Labour and Social Security on Ripon Road, Kingston.
"I did want to put her into a home, but dem seh dem cyaa do that, dem can help her, like give her money or give her house, but mi nuh have no land fi miself. Dem sign me up, an' everything, an' seh dem wi call me, and dem never call mi back."
Harvey said she also went to the ministry's Port Maria office, where she was told that because she was not living in that town, the file would have to be redone.
"Dem promise me money, them promise me everything, but up to now, nothing."
Every two weeks, Jeffnia's father gives Harvey money towards caring for the child, but the needs are much greater than what is coming in as Harvey's meagre income from vending is made even smaller by the fact that she cannot go to the market every day.
"It difficult. Everywhere mi a go mi haffi carry har. At one point mi did haffi start carry har go town wid mi an lef har wid people and go shop. An' den wen it get to mi, mi haffi stop. So dat's why mi business get pop dung. Mi cyaa get fi buy. If mi nuh get fi buy goods, mi naa go have no customer.
"Sometime me go a mi bed wid tears inna mi eye, an' like God a seh, mi nuh fi fear. An' then a just me an' she live. What if anything should happen to me inna di night?
"When I try to get her in a home, they say they don't have a case so they can't just take her like that. So I said,'What if one night I take sick and die, what would happen to her?' Mi always ask that question: What would happen to her? Sometimes mi go a mi bed wid tears inna mi eye."
Harvey said she would never ever give up on her child, but she really needs some help to care for her properly.