Poverty-stricken mom wants better life for her paraplegic son

A Benoni mother has made a desperate appeal for help to improve the conditions in which she and her disabled son (32) currently live.

Lynne Cooks explained that her son, Jamie, was diagnosed with Friedreich ataxia when he was 15.

This is a genetic condition that affects the nervous system and causes movement problems.

Most people with the disorder begin to experience the signs and symptoms between the ages of five and 15.

“People with Friedreich ataxia develop impaired muscle coordination (ataxia) that worsens over time, as Jamie has experienced,” Lynne said.

“Doctors said he would not live to be 20, but he is 32 years old already, which is a miracle for us.”

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Jamie had to leave school due to the disorder when he was halfway through Standard Eight (Grade 10).

Describing their dire situation, Lynne said she knows what it is to be homeless; she lived on the streets for four years.

Jamie was then in a care home and it was a bungled inheritance after her mom died that set the pair on a path to extreme poverty and homelessness.

“We lived in Durban when my mom died and after I received no money from my mom’s estate, I lived on the streets,” said Lynne.

“We moved to Rynfield in December 2017 after Jamie had to leave the care home he was in, in Kempton Park. We were told the home was closing down.

“Through word of mouth and help from members of our church and friends we managed to move onto the property we now stay on now.

“I also only have a Standard Eight and the only work I have been able to get is occasional ironing jobs.

“We both make little crafts if we have materials, which I then try to sell too.”

While Lynne is extremely grateful they have a roof over their heads, their living conditions have her concerned for her son’s health.

At first, Lynne and Jamie lived together in a disused aviary, boarded up with planks and other materials to turn it into some form of a home.

Jamie receives a Sassa grant of R1 400 a month and saved up R1 000 to eventually buy a second-hand wooden Wendyhouse, which he now lives in.

Lynn still stays in the disused aviary, which serves as her bedroom and the kitchen.

Both her dwelling and Jamie’s need a lot of attention.

“I’ve done my best to patch all the holes and board up the roof to protect us from the cold, but it is still extremely cold,” said Lynne.

They have limited access to electricity at night (which they must pay for) and get water and use a toilet at the home of tenants in a house next door.

Lynne cooks on an open fire in the yard.

The Sassa grant money only lasts the pair until around the 15th of the month, leaving them without any food at times for the rest of the month.

“We get through on donations – the most recent was from the Beth Zion Church in Bapsfontein, and we thank them from the bottom of our hearts.”

Lynne said that while she is extremely grateful to the family on whose property they stay and for the fact that they both have a roof over their heads, their current living conditions are not good for Jamie’s health or suitable for a disabled person.

Due to the Friedreich ataxia, Jamie is prone to spasms which are often so bad he falls out of the wheelchair.

“It is a tremendous struggle for me to lift him and sometimes I’ve had to run to the road and find whoever I can to help me pick him up,” Lynne said.

“I am his caregiver 24 hours a day, which makes it difficult for me to go out and look for work; I cannot leave him alone and obviously we cannot afford to get anyone else to care for him.

“Jamie also desperately needs glasses, as the condition affects not only speech and hearing, but also eyesight; he is battling to see,” Lynne pointed out.

Life at the moment, Lynne said, is hard enough for her as an able-bodied person, so she can only imagine the struggle it is for Jamie.

“He is intelligent and computer literate.

“It breaks my heart. Jamie asked me the other day ‘will we ever move?’

“There has to be a better life for us.”

Apart from their own worries, a colony of feral cats has also “adopted” Lynne and Jamie; she said she feeds them off whatever food they have.

“As much as they have crept into our hearts and are lovely company, we really need the SPCA or someone else to intervene,” Lynne pleaded.

The pair’s most pressing needs are for a new wheelchair for Jamie, food (non-perishable), hot water bottles, toiletries and blankets.

Lynne added that a gas burner on which to cook would make a world of difference too.

Anyone wanting to donate or help in any other way can contact Lana O’Neill at the City Times on 011 425 0164 or lanan@caxton.co.za

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