A family's struggles with epilepsy, muscular dystrophy and stroke

Madam Jayshree Karnanithi (right) with her husband, Mr Ganesan Balakrishna (centre) and her father, Mr Srikanthan Karnanithi (left) who moved in with the couple.

He was diagnosed with muscular dystrophy at the age of 13 and needs a wheelchair to get around. His wife struggles with epilepsy.

Madam Jayshree Karnanithi, 33, and her husband, Mr Ganesan Balakrishna, 35, find strength to carry on only because of each other.

She came forward to tell their story after reading The New Paper's report on Mr John M. Fernandez and his wife two weeks ago.

Mr Fernandez, who lost his legs in an accident years ago, won a caregiver award for looking after his wife who became wheelchair-bound after suffering two strokes six years ago.

Madam Jayshree said: "I was touched by their story and how they cared for each other. I could really relate to it.

"I asked my husband to read the report and told him that perhaps that would be us in years to come."

Because of their medical conditions, the couple are unemployed and get by on $550 a month of financial assistance from the Community Development Council.

They have been living in a one-room flat in Mei Ling Street for the past nine years.

They spend their days at home talking to each other, playing mobile phone games, reading the Bible and going to a nearby church several times a week to pray.

Three to four years ago, Madam Jayshree's 56-year-old father, Mr Srikanthan Karnanithi, moved in with them. He suffered a stroke less than two years ago.

Although Mr Ganesan's right side is weakened by his disease, he still does many chores around the homee. He cleans the floor with a mop while sitting in his wheelchair.

Accompanied by his wife who pushes him to the nearby market, he buys groceries for the family and cooks their daily meals.

"His curries and sambal dishes are really the best. I admit I am quite pampered," said Madam Jayshree with a laugh.

She is in charge of handling their communication with the hospital, which she and her dad have to visit occasionally.

"I am not that great when it comes to speaking in English," said Mr Ganesan, who is more comfortable using Tamil.

The couple met through a mutual friend when Madam Jayshree was 21.

After dating for almost two years, they got married - against the wishes of Madam Jayshree's mother - in 2005.

"She disapproved because she saw him as a handicapped person but I did not mind and urged her to look beyond his appearance. But she is a stubborn woman," she said.

At that time, Mr Ganesan did not need a wheelchair but walked with difficulty and would sometimes fall.

NO REGRETS

Madam Jayshree has never regretted marrying him, even with all the challenges in their lives.

Her last episode of fits was just last month, each bout leaving her weak and bedridden for weeks after.

"She would bite her lips and tongue when it happens, and have very bad headaches after," said her husband who longs to be more independent.

He has tried to get a job selling newspapers at a kiosk or a stall in the area but no one has been willing to hire him.

Still, the love between the two is evident. Even though money is tight most of the time, Mr Ganesan tries to shower his wife with little gifts.

"Sometimes I'd complain that other husbands buy their wives gold jewellery but I don't have any.

"So he bought me a crystal bracelet," she said, showing this reporter a thin, sparkly strand that adorns her right wrist.

They admitted that they have fears about the future, especially because Mr Ganesan's condition is likely to deteriorate gradually. But they prefer to take it one step at a time.

The couple's MP, Dr Chia Shi-Lu, said: "We have helped Madam Jayshree in the past, through various agencies, with several minor matters but she has not approached us specifically in the past one or two years although we see her in the neighbourhood.

"But it certainly is not easy to do what she is doing, looking after the two physically-challenged members of her family.

"As her MP, I respect and admire what she has done, and am always ready to support her and her family should she require our assistance."

Madam Jayshree said of her husband: "No matter his condition, I'll take care of him."

To which he responded: "I don't talk about divorce no matter how hard things get. To me, marriage is about being together until we die."

benitaay@sph.com.sg


This article was first published on May 20, 2015.
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