Writers: Adella Madyane and Prosper Kwigize The German government has provided Euro 11.500 million equivalent…
Adela Madyane-Kigoma, Tanzania
A six-month-old child resident of Simbo village found in Kigoma region, she is suffering from a strange disease that led to sores all over his body and her parents are struggling to find treatment for him, going from the clinic to the hospital without success. He is suffering a lot and needs help
This child named Miriam Rashid, started to get sick when she was only three months old, It started with a series of unexplained fevers, her father said Mr. Rashid Martine. By the time she was approaching six months of age, her ankles and joints were all wounded, her stomach as well, her parents became worried and they started looking for medication
The parents of this child, speaking in pain and refusing not to be photographed, explain that, from Simbo village they took their baby to many hospitals including Maweni regional, referral hospital, Bugando hospital, and later Muhimbili National Hospital
The father tells” the wounds extremely got into a chronic state, I have never seen a child with such big wounds, wounds that are considered to be most aggressive and some of the experts they have never seen such diseases “
He said they had suffered enough to get medication for so-called chronic wounds, “I had stopped all my activities to make sure my daughter’s health condition is stabilized but unfortunately she passed out when she was only nine months in 2018”
He lamented that his child died with weak skin, she could never sleep, she was only crying from the pain, whenever she touched her joints she ended up tears and that thing broke her parent’s hearts.
In 2022 Miriam’s parents managed to have another girl child who is now six months, while at three months the same symptoms started to appear and kept red alert to parents and they started the battle to fight the life of their born child.
The six months girls child (Monica) ankles are all eaten with wounds, the girl is highly suffering, and the parents are also suffering on how to get health practitioners to heal their child so they can avoid losing another child
After several attempts to the hospital, the father of the child Rashid Martin gave up on the hospital and started visiting witch doctors thinking that their child is bewitched
“I thought people have bewitched my child, I wonder what kind of disease would happen to such an innocent child, it has started just like to my late Miriam, and am still wondering why the hospital can’t detect the type of disease, I can’t lose another child, it is so painful,” said Martin
By the time Martin and other family members were hustling to cure the child to witch doctors with no cure, the conditional got worsened and they decided to go back to Muhimbili National Hospital for further assistance and cure though the hope still seem to be low He said at first the hospital diagnosed the girl thinking that she had cancer or diabetes, sickle cell, anemia, lymphoma, and leukemia but with all that Monica’s condition is still a mystery” said
He said the diagnosis found out the child had a wound thinking might be an uncle which most of the time does not heal, and they appear at any stage of human development and it is commonly caused by poor circulation, though it may be attributed to a variety of ailments.
> The doctor had said to Martin that “it is difficult and expensive to diagnose the child with rare disease because it is associated with genetic sequencing and its treatment is complex”
Currently, Martin’s family is following health programs that they were advised in Muhimbili hospital and they attended the clinic last week though the condition of the child is still critical and they are wondering where to get treatment
“I’m too afraid to lose my child, I wish someone is here to support me, my economic conditional is also unstable to move here and there for treatment, what do I do” asked Martin with teary eyes.
Martin is asking for support from the government and people with goodwill to support his child with ways of treatment for her survival for wounds are getting chronic and have started to spread the whole of her body.
Due to the scarcity of rare disease treatment Sharifa Mbarek and her husband Mohammed Kimara who had passed through such a situation with their child Ali in 2013 have decided to open, Ali Kimara Rare Disease Foundation, which will be able to assist the families who are going through the same experience.
Mbarek once said, “through the tough and challenging experience to raise children with rare disease, I have come up with an idea to start the foundation with a mission to be the voice of an unknown number of people living with a rare disease in Tanzania, supporting patients to make their voice stronger through various initiatives and activities,” she said.
Commenting on the challenges facing patients with rare diseases she says that, health care and social support services are designed for patients with common diseases and not patients with special needs. Lack of a diagnosis can result in patients and families being denied necessary services in hospitals, schools, and the community.
Adding to this she says, patients with rare and undiagnosed disorders require the coordination of multiple specialists. Limited research into rare disorders provides limited hope. If the National Hospitals could start this program of screening babies after birth at least it would help for early diagnosis. she believes this is the key point in the lifecycle at which the possible presence of a rare disease may be indicated.
Dr. Mariam Noorani, Paediatrician at the Agakhan Hospital once said that a rare disease is inherited; at times parents don’t have symptoms of a rare disease but can carry an abnormality gene, which causes it.
A rare disease affects a small percentage of the population. Most rare diseases are genetic, and thus are present throughout the person’s entire life, even if symptoms do not immediately appear. Many rare diseases appear early in life, and about 30 percent of children with rare diseases will die before reaching their fifth birthday.
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