'Sometimes rats invade and nibble some of my son's body parts when I am away. He cannot help himself at all'
PIC: Serwagi with some of the children with hydrocephalus at HSI head offices at Nkumba, Wakiso district.(Credit: Julius Luwemba)
Mothers of children suffering from hydrocephalus, under their umbrella Hydrocephalus and Spinabifida Initiative (HSI), narrated the hard time they face while raising their children with special needs, saying most of the fathers flee their homes after giving birth to "such children."
"I am currently residing in one of the churches in Kampala because all my family members abandoned me, including my own husband," narrated Faith Namara, a mother to Timothy Matovu, a 14-year-old boy suffering from hydrocephalus and spina bifida syndrome.
According to Namara, both her parents and those from the husband's side, rejected her for having insisted to keep "that kind of child."
"My son cannot move any part of his body nor make any sound, so he finds himself in a total state of helplessness. Sometimes rats invade and nibble some of his body parts when I am away. He cannot help himself at all," further expressed Namara.
Each and every mother of the 43 children narrated their painful story that could not leave any dry eye. They further intimated that taking care of such children is a full-time job, leaving them with no space and time to do other work.
"It is also very hard for us to use public means of transport because taxi operators feel we take a lot of their time and space whenever we're to move with the children," added the mothers.
Patience Mbabazi, the founder of the initiative, revealed that there is only one hospital which manages hydrocephalus and spinabifida syndrome in the region and it is found in Mbale. She called on more parents with such 'special' children to join the initiative for counselling and recommendation for proper treatment.
This was said during a thanksgiving ceremony held over the weekend at HSI offices in Nkumba parish, Katabi town council in Wakiso district where mothers and children received a donation of clothes plus other necessities from Derrick Serwagi a Danish citizen of Ugandan origin.
Serwagi, who is a board member of a Non Government Organisation (NGO) known as ENGAGE, said he got to know about the children with hydrocephalus syndrome while watching Bukedde's Agataliiko Nfuufu during one of his stay in Uganda last year.
"When I went back to Denmark, I started mobilising for necessities and this is my second time visiting these children," said Serwagi.
He pledged for continued support towards the initiative plus income-generating avenues for the mothers who spend most of their time taking care of hydrocephalus children.
About Hydrocephalus and Spina bifida
Hydrocephalus is a condition in which there is an accumulation of cerebrospinal fluid within the brain, causing increased pressure inside the skull. It can occur due to birth defects such as infections, lack of enough folic acid, alcoholism, smoking, uncontrolled diabetes among others. The cause can as well be genetical, causing a rapid increase in the head size among other symptoms.
Hydrocephalus can also affect older people, bringing about headaches, double vision, poor balance, urinary incontinence, personality changes or mental impairment.