The ManicaPost
Tanyaradzwa Mujati
Post Reporter
“I WAS traumatised watching my two children suddenly becoming wheelchair bound at a relatively young age. They were born normal and could do all chores like their counterparts until they were attacked by this rare disease. No one had an explanation to the sudden turn of events.”
These were the words of Ms Susan Chitanyi, a mother of two boys, Liberty and Tafadzwa Chaitwa, who both succumbed to the genetic disorder Duchene Muscular Dystrophy.
Tafadzwa was the last to succumb to the disease on November 23 this year at the age of 21. His death was attributed to heart failure.
He was the last founding boys of people who were living with Duchene Muscular Dystrophy being housed at the District Outreach for Care and Support (DOCAS) Centre in Odzi.
He started his treatment at the age of 12 and his life span was increased by almost six years at the centre as the average lifespan in Zimbabwe is 15 years for people living with the condition.
The genetic disorder Duchene Muscular Dystrophy (DMD) is characterised by progressive muscle degeneration and weakness resulting from alterations of the protein dystrophin that helps keep the muscle cells intact.
Until recently, children with Duchene Muscular Dystrophy did not survive beyond the age of 16, but advances in cardiac and respiratory care have increased their life expectancy to 21.
Duchene Muscular Dystrophy is the most common fatal genetic disease diagnosed in childhood with no available cure.
It is an inherited disorder of progressive muscular weakness which is typically found in boys.
Girls can be carriers and are mildly affected, but the disease mostly affects boys.
Of late, the European Union has conditionally approved a drug called Ataluren (Translarna, PTC Therapeutics) to treat patients with Duchenne Muscular Dystrophy (DMD).
Ms Chitanyi said: “It is so sad that I lost my child at a very tender age. Tafadzwa showed no signs of the condition while growing up. He later started having a stiff calf muscle. He started limping and suddenly he could not walk.
“This frustrated my husband, Simbarashe Tawanarwo and he began throwing tantrums at everyone. Little did I know that he will vent his anger on my other son, Liberty who was already wheelchair bound. He would ill-treat him and he ended up killing my innocent child by smashing his head on the ground.”
Tawanarwo was arrested for murder and was confirmed as a mental patient by three doctors who examined him.
He was released from remand prison and his whereabouts are unknown.
Mrs Chitanyi said after the death of her son, Liberty, she left her matrimonial home, fearing that her abusive husband would also murder Tafadzwa.
“I heard an advert through the radio about a home where I could send my child for treatment. I had no relative in Mutare, but I had to do what was best for my son and took him to DOCAS where they welcomed him with open arms,” said Ms Chitanyi.
Ms Chitanyi was blessed with three children and the other son is now married and does not have the condition.
She said there was no one who suffered from Duchene Muscular Dystrophy from both her own and husband’s families, thereby drawing the ire of her husband.
Ms Chitanyi who is now a vendor in Mutare is staying in a one-roomed house at an Islamic Mosque in Gimboki courtesy of the benevolence of the Islamic Sheikh.
DOCAS’ chief executive officer, Reverend Togara Mapingure said Liberty was very unfortunate as he died at the age of 14 after being fatally assaulted by his father.
“The father was very traumatised by having two boys with the same condition. By then the elder one, Liberty, was the one who was wheelchair bound. He was gruesomely murdered by his father at their rural home in Bikita, resulting in their mother running away to Mutare in-order to save her son,” said Reverend Mapingure.
Reverend Mapingure added: “In the past, children with Duchene Muscular Dystrophy would die at the age of 15 or 16, but Tafadzwa has been at the centre from the age of 12. He died at the age of 21, showing that we managed to extend his lifespan by five more years.
“We took Tafadzwa in 2014 so that he could resume school. He was the most brilliant and cheerful boy in his class. At 21, he was still doing Grade Six because he had been retarded by his immobility. He was prayerful. He was also a good preacher. Wherever he is, I know he is safe in God’s hands. He was a great musician and he started the first choir group at the centre,” said Reverend Mapingure.
Tafadzwa appeared on several shows advocating for the support of children living with Duchene Muscular Dystrophy in Zimbabwe which resulted in DOCAS identifying more boys who were living with the condition countrywide.
In recognition of Tafadzwa’s role as a Duchene Muscular Dystrophy, Nyaradzo Funeral Services donated a full pack of services, including the removal of bodies from the DOCAS Centre, mortuary service, coffin and burial at Dangamvura Cemetery.
Reverend Mapingure also said: “The disease affects from the lower limp to the upper limp. It only becomes fatal when it reaches the lungs and heart. So through physiotherapy, we can reduce the pace which it grows from the limps to the lungs and heart.
“Duchene Muscular Dystrophy 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 is 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. We have been able to increase the lifespan of the victims with such a condition.
“There is no progression with Duchene Muscular Dystrophy. It is just a matter of failure.
‘‘It can be a heart or lung failure. It happens in a blink of an eye. Tafadzwa showed signs of heart failure and he died.”
