A young mother whose child has been struck with a rare disease -commonly described as “water in the brain” -is appealing for help from wellwishers.
Suzan Santino is a 31-year-old resident of Kuajok town, Warrap state with six beautiful children.
But one of the kids has been experiencing constant headaches, impaired vision, cognitive difficulties, loss of coordination and incontinence.
”We woke up one morning and I discovered that his head had begun to swell,” Suzan said.
10-year-old Mathiang Madut is suffering from Hydrocephalus, a condition characterized by head enlargement.
Medical doctors say it is a condition in which an accumulation of cerebrospinal fluid occurs within the brain. This increases pressure inside Mathiang’s skull.
According to Suzan, Mathiang was first diagnosed with Hydrocephalus six short months after being born in 2010.
The little boy whose twin brother is said to be healthy has since then been struggling with personality changes and some form of mental impairment.
Due to lack of proper treatment and funds, Suzan said, they could not afford urgent treatment abroad.
Suzan was married to a second-hand clothes trader, whom she said was unable to even feed them, “let alone meet the medical expenses for Mathiang.”
In 2012, Suzan said Mathiang’s condition had become unbearable as he continued to lose weight due to poor feeding, developed fixated eyes and a rapid increase in head swelling.
Search for answers
In her search for a solution, the mother and child said they first travelled to Turalei, and later to Wau Teaching Hospital in Western Bahr el Ghazal state where they were admitted.
“I was told that it was just inflammation,” Suzan stated, adding that every day the doctors would inject her son with some medicines, “but there was no improvement.”
“His head just kept getting bigger and bigger.”
After 3 months, they were discharged from the hospital without any change in the health of Mathiang.
Between 2012 and 2014, Suzan, who gave birth to her fourth child, said she made several appeals to the then Ministry of Gender, Child and Social Welfare in her home state, but no one could come to their aid.
“They would only tell me to go back home, and that all they can do is share the pictures of my son on Facebook and see if someone can help,” Suzan mentioned.
The officials also reportedly misplaced her letters of appeal that she had written -with the help of a neighbor -to the local government.
“I asked for the documents, they said it got lost, and I was like -I’m not begging you for me, I just want treatment for my son.”
In 2015, the then 26-year-old mother gave birth to her fifth child, Achol Madut.
Throughout this period, she said, Mathiang got paralysed. He could no longer walk due to the depreciated body and the size of his head.
In 2018, Suzan said her husband “deserted her and the kids” and has not been able to trace him since.
She stated that her father stepped in and provided food for the children.
But in the same year, the old man passed away living Suzan and the children without a breadwinner.
While narrating her ordeal to Eye Radio, Suzan said she “felt lost after being abandoned by her husband and losing her father in the same year.”
“I felt like giving up, but what about the children?” she pondered.
She continued to fend for the 5 children.
In 2020, Suzan got pregnant for another man with her sixth child, but the man also left after “feeling the huge pressure of taking care of me and all the children.”
He left her with six children and her younger brother who has been helping care for the children.
She admits that it has been extremely difficult to provide for all the children, while at the same time giving “special care” for her son who is still struggling with Hydrocephalus.
According to Suzan, Mathiang’s condition has reached a troubling stage as he is struggling to wake up, has trouble in controlling urine and stool.
Although she is seeking for a medical solution, Suzan indicated that she has given up hope on restoring Mathiang’s health.
“I’m not looking for treatment for my son because I think it’s too late for that, he didn’t get any help from anyone, and it has been a long time,” an emotional Suzan said.
“I just want a wheelchair for him.”
Suzan also expressed concerns over the future of her children. She is worried about what will become of her children if anything were to happen to her.
“I’m the only one now carrying the burden of all the six children, plus my younger brother, we were chased out of my mother inlaw’s house, and I don’t know how to care for them,” she lamented.
Suzan is “pleading for a job so that I can take care of these kids.”
Suzan Santino, who is now a single mother in Kuajok town says she is trying hard to provide food and shelter for Deng Madut, 12 years, Mathiang and his twin brother Mayen, 10 years, Bol Madut, 8 years, Achol Madut, 5 years, and Santo Mawein, 10 months old.
“Help me amplify my voice and appeal to all people of goodwill,” Suzan Santino appealed to Eye Radio.
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