BUDAKA – With an emaciated body, Fayima Kudoma turns slowly on her mat in Kosit, Kadimukoli sub-county in Budaka district, the grimace betraying the pain she is enduring.
As Kudoma squeaks she is careful not to provoke the aching, discomfort of the bones and chest that is linked to the disease that has affected the normal function of her body.
Ms Fazira Nambaya, her mother says Kudoma is 14 years but the picture of haggard teenager looking like a six year old, brings tears to my eyes.
Kudoma who looks lean, frail and seems to be getting weaker says she is well with a twinge of sadness written on her face.
According to the mother [Ms Nambaya], her daughter [Kudoma] was walking well like any other teenage, she would play with other teenagers, would walk from Namirembe to her home [about 8Km] and do house work chores well but that in 2020, an unknown disease struck her and confined her at home.
She explained that she [Kudoma] has been down for close to two years and that the ailment has taken a toll on her.
It is clear from her looks that the youngster has lost weight and her hitherto light complexion has faded and the only energy left in her is muted responses to questions from her mother and wishes of quick recovery from her visitors.
With her prominent cheekbones and sunken eyes, Kudoma appears badly undernourished. This is a big contrast to the picture of her taken on the day before she became sick.
Reports at home reveal that she had been secluded at home unable to speak and her body has developed wounds behind her back and on the buttocks because she has been in bed for long.
Many neighbors this reporter talked to agree that the rare condition she has been facing makes her look young than she really is today.
Mr Muhammad Maluka, a father to Kudoma says they have tried everything within their means to save the young girl but that they are apparently stuck because they don’t have money to take her to better hospitals.
“We now just sit and give her whatever is available as we wait for God to decide. Because it is now up to God, we cant do much when the Doctors have failed. Maybe you have come with something new, tell us. It is tough but I have had to look on as the disease eats up my daughter,” said Ms Nambaya before shading tears.
Although Kudoma’s father is a Boda boda rider, the home is just one of the rural families living conditions of those who live in poverty and throughout most families in Kosit parish, many of the children struggle daily with a humbling consequence of poverty with inadequate clothing, no feeding, children attending school in ragged clothes often embarrassing which usually hinders learning etc.
“And the biggest problem of this girl could be poor feeding given the poverty in the home because for sure how do you feed such a sick child on Cassava, posho and millet daily,” said a neighbour who asked for anonymity.
Ms Nambaya says her daughter started having some seizures when she enrolled for Primary one at Namuyaga primary school and that occasionally she would fall on the ground attracting many pupils around her.
“And the school administration advised me to take her to hospital for treatment and to keep her at home for close monitoring,” said Ms Nambaya.
According to medical forms seen by this reporter, Kudoma was taken to Namirembe Health Centre III on 7 August 2017 and the clinical officers at the health facility diagnosed her with epilepsis.
“Unknown epilepsy, there is also a watery discharge, take for treatment as advised,” reads the medical form in part.
Another medical form dated March, 18, 2018 for Budaka health Centre IV says Kudoma was examined and found with epilepsis, VTI and some disorder of the brain.
Mr Sam Wajega a senior clinician at Mugiti in Budaka [then acting DHO for Budaka district] when asked for a comment, he said he has not seen the patient at all and that if he had seen the patient he would have been able to give better comments and medical advice.
While on their usual work in the communities, The Mbale Network of young people living with HIV/Aids identified Kudoma through a community peer and they shared it out on the social media which attracted attention from a philanthropist
Mr John Sugden.
And touched by the story of this child, Mr Sugden based in United Kingdom – UK gave support through this network [The Mbale Network of young people living with HIV/Aids] in form of food [E’pap porridge] that has been used to feed the girl but without proper treatment.
“We have given e’Pap’s instant, precooked porridge mix that contains 24 essential micronutrients and 4 macronutrients to give her nutrient-dense food solutions and this is meant to give her energy in order to have her taken for treatment,” said Mr Sugden.
“e’Pap is affordable and easy to access for people in resource-constrained areas. It is a suitable food to modify using the various diet textural levels for liquids and solids as per the guidelines promoted by the International Dysphagia Diet Standardisation Initiatives and we believe this will give her some energy and rebuild the body cells” Mr Sugden added.
He revealed that e’Pap’s porridge has 24 crucial micronutrients necessary for healthy brain development, immune system functioning, and fighting infections and that it is a 4 macronutrients (starch, fibre, protein and fat) aid in the rapid absorption of vitamins and minerals in the body.
He added further that their porridge’s micronutrients are: vitamins A, B1, B2, B3, B5, B6, B7, B9, B12, C, D, E, and minerals include potassium, iodine, phosphorus, with 9 amino acid chelates that is good for malnutrition.
Your Daily Nutrition in One Bowlo creating a nutrient-rich and physiologically functional African population by resolving type 2 malnutrition, or “hidden hunger”, caused by micronutrient deficiencies.
Mr Wajega says although seizures are the main sign of epilepsy, some seizures can look like staring spells while other seizures cause a person to fall, shake, and lose awareness of what’s going on around them and I want to ask the parents to seek further treatment at Embago health Centre in Mbale City,”.
Ms Nambaya says this is not her first child to suffer this kind of disease but that two of them died when they developed seizures at the ages of six and one months and a half and later they died.
“And what surprises me now is that this child had gone through the early years of this disease and when she is already old, the disease comes and cripples my daughter, retards her growth and speech,” said Ms Nambaya.
Dr Julian Abeso, a pediatrician at Mbale regional hospital said there are many diseases that retard growth of children and that until this patient is brought before her, she can’t tell the cause of retardation in growth for this particular child.
Dr Abeso explained that the causes of retardation in growth of children are due to poor feeding, genetically inherited problems and heart complications and that it is good for families to find out exactly what the cause of retardation in their children is
“If your child is smaller than other children their age, they may have a growth problem, it is typically considered a medical issue if they’re smaller than children their age, and their rate of growth is slow,” said Dr Abeso.
A paper by https://www.healthline.com/health/delayed-growth-symptom, understanding delayed growth and how it is treated says the sudden delay in growth could be due to low levels of the hormone thyroxin which could cause, a loss of energy, constipation, dry skin, dry hair, and trouble staying warm, low levels of growth hormone (GH) that could also affect the growth of their face, causing them to look abnormally young.
The healthline newspaper adds that other causes of delayed growth which are less common include, down syndrome, a genetic condition in which individuals have 47 chromosomes instead of the usual 46, skeletal dysplasia, a group of conditions that cause problems with bone growth, certain types of anemia, such as sickle cell anemia, kidney, heart, digestive, or lung diseases, use of certain drugs by the birth mother during pregnancy and poor nutrition.
Dr Muhammad Mulongo [Mbale regional referral] says failure to gain weight satisfactorily like poor weight gain are due to parental neglect or lack of food.
He explained that a large number of important gastrointestinal disorders may be responsible, including those associated with vomiting, such as food intolerance or obstruction of the upper bowel by pyloric stenosis; disorders of digestion and absorption, including celiac disease and cystic fibrosis; and bowel infections.
He revealed that alternatively, the body, because of other serious disorders (e.g., chronic infection or heart or kidney disorder), may fail to use the food that is given and absorbed appropriately.
“What this family should do is to go to the hospital and find out the real cause of this sickness for rescue,” said Dr Mulongo.