adminSamuel Kadungure Senior Reporter
AN impromptu initiative in 2012 to rescue six dystrophic children of the Gwizo family from exclusionary and discriminatory setting that impeded their growth and chances of attaining full potential – has culminated in the creation of a sophisticated centre for neuromuscular patients.
The first phase of Mount Olive Muscular Dystrophy Centre built by District Outreach for Care and Support (Docas) at Claire was commissioned last month and focus is now on raising $10 million to complete the second phase which includes a 100-dedded hospital.
The centre integrates rehabilitation and education of the often neglected and abandoned dystrophic children, while ensuring that their healthcare is improved.
Inmates have access to treatment and assistive technologies that prolong their life, access to advanced tests of diagnosis that allow them to know specific type of MD they have, know what the future will bring and risk of passing the disease on to their children.
The centre’s goal is to cater for an estimated 3 250 MD patients in Zimbabwe.
Muscular dystrophy (MD) is a genetic disease that gradually causes weakness and loss of muscle function.
Patients with the condition lack normal dystrophin, a protein found in muscles, which helps to protect muscles from injury.
In patients with the disease, the muscles become damaged and eventually stop working, leading to disability or death.
The disease affects males in a family and it is common to have many muscular dystrophy patients under one roof – and in most cases these patients are prone to ridicule and considered a burden.
Docas chief executive officer, Reverend Togara Mapingure, said the centre was dream come true as it provided everything required for quality life for the dystrophic children, including a school, whose integration was meant to eliminate travelling barriers and deeply ingrained cultural intolerances.
“We have a holistic package for the children, a hospital, muscular dystrophy centre and school all rolled into one to effectively improve the condition of the children. We moved 30 children with muscular dystrophy and we expect more,” said Rev Mapingure.
There is general lack of knowledge about the disease in Zimbabwe, with the impairments misconstrued for punishment from God, result of “sins” committed by parents; an act of the devil; that the child was a sorcerer; witchcraft on the child, family or that the mother had looked at a disabled child during pregnancy.
These children are often regarded as “supernatural”, “bizarre” or “demons” and parents lock them indoors, meaning they have unmet needs.
Research shows that these children are subjected to profound levels of poverty, exclusion and discrimination and such harmful practices are rooted in traditional beliefs.
Muscular dystrophy is not a curse, but a genetic condition that causes the muscles to gradually weaken, leading eventually to total disability and, in some cases, death. There is no cure for the disease and steps can only be taken to alleviate the most painful symptoms.
Mrs Sharai Nyabocho, a special needs teacher at the centre, said there was need for aggressive campaigns to conscientise society about the condition to rescue affected children and expose them to modern facilities that enhance their chances to attain full potential in life.
After all child rights are enshrined in the constitution and the country has adopted the Convention on the Rights of the Child.
“Most of these children are drawn from poor families, where they lacked access to needed healthcare, education, adequate nutrition, attention and opportunities for play. In the past they did not enjoy any rights, but since their adoption by Docas, they become accustomed to enjoying basic rights and their health has drastically improved. It is unfortunate that society still regards children with this condition as bizarre or demons, yet it is a genetic condition.
“These children stopped going to school a very long time ago as the parents used to lock them indoors to avoid cultural hostilities. They only resumed school in January, 2015, starting from Grade One and I can tell you that Muscular dystrophy does not affect the child’s intelligence; they can master education like any other children. Their only challenge is that they are slow in writing because their muscles stopped practising long back. At the moment it difficult to give them four exercises per day as some can take more than two hours to complete an exercise, but we can improve their learning with assistive devices like computers,” said Mrs Nyabocho.
“If their condition was known long back and the requisite assistance rendered, their writing skills would not have deteriorated to current levels. Some of them are proving to be proficient and have potential to do well in life. Communities should be conscientised about this condition so that these children get assistance at an early stage in life,” added Mrs Nyabocho.
Clergy, Dr Noel Pashapa, whose church has donated $16 000 towards the first phase, said it was saddening that parents whose children are encumbered with neuromuscular conditions continue losing their wealth to n’angas and fake prophets.
“The Bible says my people will perish due to lack of knowledge, and we need to open the eyes of parents with children like these so that they don’t continue losing money to fake prophets and n’angas. This condition is inherited and now we have knowledge, we must support initiatives like this,” said Dr Pashapa.
Rev Mapingure said Docas, in conjunction with the Mt Olive Lutheran Church, Paul and Sheila Wellstone MDC and the medical teams from America introduced a series of palliative treatments that can improve some of the symptoms, at least in some small degree, or diminish some of the inevitable advances of the disease.
Of late, the European Union has conditionally approved a drug called Ataluren (Translarna, PTC Therapeutics) to treat patients with Duchenne Muscular Dystrophy (DMD).
“We have instances where some with muscular dystrophy have made it in life, in America the oldest is 52, as a result of improved care and use of new drugs.
DMD is a genetic muscle disease caused by a complete lack of the dystrophin muscle protein. Ataluren is designed to change the way cells read the genetic instructions for the dystrophin protein so that functional dystrophin protein can be produced. It’s known as a “stop codon read-through” drug. What we are also doing is to ensure that these children have access to such drugs without delay,” said Rev Mapingure, adding that the patients who will benefit the most are those aged five years and over who are still able to walk.
Mrs Susan Chaitwa (47) – who last year fled her matrimonial home to save the life of her dystrophic son, Tafadzwa (13) following a nasty incident in which her husband had killed their other son – who had a similar condition – by smashing his head on the ground for the uncanny belief that the disease which had afflicted the couple’s three sons was nothing but a curse of God, said the condition of her son had improved drastically.
“Tafadzwa’s condition has improved. His health and education needs are well catered for, something I was failing to do for him. I had been told by n’angas that I would lose him at 15, but I am happy he is still alive and healthier. I can’t believe it, I thank Docas for rescuing my child,” said Mrs Chaitwa.
The Red Cross Society of Zimbabwe has chipped in by training 80 volunteers to take care of the children at the centre.
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