Mother’s Day is celebrated on the second Sunday in May in many countries. In other places, the dates vary. But across the globe, there is one thing that unites them all: a universal love. In tribute to them, we are publishing one of millions of stories today: the story of the kenyan humanist Dorothy Adenga. It portraits only one part of her history, but a very significant one.
‘He is my hero’ – Kisumu mother shares struggles of son living with rare disease
Dorothy Adenga smiles as she plays with her son in a rare mother-son moment after they have enjoyed a plate of vegetables for lunch at their home in Kano, Kisumu.
The face of 17-year-old Wayne Joseph lights up, and he flashes a gleeful smile in response before engaging her mother in light talk about how he is feeling in an upbeat tone.
That breathtaking interaction between a mother and her son masks the pain and struggle that the family has endured for several years, and which has drained the family’s finances and tested their resilience, but strengthened their love after a rare medical condition struck the family.
Wayne is one of the children of the family struggling with Duchenne Muscular Dystrophy (DMD) – a rare medical condition characterised by weak muscles, leading to the loss of the ability to walk.
This is the situation that the family has been battling since Wayne was diagnosed with the condition when he was still a toddler.
“He is my hero. I have been struggling with his condition, and it has been a torrid journey, but we are still coping,” Adenga explained.
Their story is a story of resilience as the mother recounts how she has been enduring raising her child with the condition that has left her with several unanswered questions.
PHOTO/Viola Kosome
The family is among many families that have been battling a rare condition that is barely known to many people. A journey fraught with several obstacles.
However, Adenga is using her own experience with dealing with the rare condition to increase awareness of the disease, even as she admits the journey of taking care of children with the disease has not been a walk in the park.
She is among the mothers whose families have had to adjust themselves as they dedicate themselves to addressing the condition that some barely understand.
“I have been taking care of him. Initially, I did not understand the condition and wondered about the root cause of the condition,” she says.
According to her, when she gave birth to her son, like any other new mother, she did not know that her son was developing a condition. She had ticked all the boxes that are required for a new mother, had religiously attended her clinics and had taken all the drugs that had been recommended by her doctor.
“When I delivered, I gave birth to a normal, bouncy baby boy weighing 4.8 kgs at Siaya County Referral Hospital,” she said.
Just like any other normal child, she said, Wayne grew up happily. However, when he joined nursery school, she said they started noticing he was increasingly struggling to support himself. His muscles appeared weak, and he could barely support himself.
For a moment, they assumed he was just normal and that the condition would change as he grew up.
“After consulting, I asked my mother-in-law about Wayne’s experience and even hers; she encouraged me and assured me that it was normal,” she said.
PHOTO/Viola Kosome
One day, she noted that she was called by Wayne’s teacher, who informed her that he had never uttered a word in class. She assumed the problem was with the school and opted to transfer him to a different school, with the hopes that his condition would improve.
However, the situation slightly improved, but she noticed that he was always falling down and could barely support himself.
“Wayne used to fall down nearly all the time, and I could quarrel with him and ask him why he was falling and making his clothes dirty,” she said.
Doctor’s advise
After getting a lot of concerns about his condition, the family decided to visit a physiotherapist at the Oasis Hospital in Kisumu. The medic recommended that they visit a neurologist.
She notes that the doctor directed them to conduct several tests on Wayne, which were so expensive. She says her supportive friends chipped in and helped them raise money.
After the several tests, she says her son was diagnosed with Duchenne muscular dystrophy (DMD).
“It was a shocker for us as a family because we did not understand the condition,” she explains. According to her, she had to battle stigma and her own fears. A turn to social media for information on the disease only compounded her woes.
“People were talking negatively about us, and some started relating my son’s sickness to wealth because that was the time I owned a school. Some friends advised me to visit a witch doctor, while others told me to take him to certain churches. All these made me feel bad, and I withdrew from friends,” she said.
Today, however, the mother of two is walking a new path as she helps her son manage the condition.
Medical experts report
According to medical experts, the condition mostly affects boys, but women are the major carriers.
“I have to be there for my son, and that is why mothers like me need to accept the condition and take care of the innocent children who may be affected by the condition,” she says.
But she is not alone. She has now partnered with a mother who lost four of her children to the condition as they give each other moral support.
The woman, Nelly Achieng, a resident of Rabuor in Kisumu, is still struggling to come to terms with her loss after losing four teenage sons between the ages of 17, 18 and 19, as well as her 20-year-old son. Her last-born is also struggling with the condition, but she has enrolled him in a special school as part of an effort to reduce the stigma the family has been subjected to.
Expensive and demanding
“This disease is very expensive and demanding. I have to take my child for therapy at least three times a week as well as monitor the type of food that I give,” she said.
She urged other parents with similar situations to treat their children just as they treat the normal ones.
She says the disease is rare, and before diagnosis, she really struggled to find the problem and walked into several health facilities until she was referred to Jaramogi Oginga Odinga Teaching and Referral Hospital.
She appealed to the Ministry of Health to do tests when women are pregnant to avoid giving birth to several children with conditions.
“There used to be mobile clinics where physiotherapy could be brought to the children at home, but that, however, is no longer there. I also want to plead with the government to provide wheelchairs for children born with rare conditions, as their wheelchairs are expensive,” she said.
She says the wheelchairs are expensive, and the appropriate one goes for at least Sh28,000.
She says the disease is neglected, and there is no awareness of it.
According to Nelly, she says the disease has always been in her family since her sister also lost her sons to the disease.
She appealed to parents not to give up on their children.
A paediatric neurologist in Kisumu, Dr Nicholas Odero, who is also a lecturer at Maseno University, has raised concern over the devastating impact of Duchenne muscular dystrophy (DMD), describing it as a progressive and life-limiting genetic disorder that continues to affect young boys, often with little access to specialised care.
“Duchenne muscular dystrophy is a disease of muscles where, due to genetic changes, someone is born with muscles that lack a certain critical protein called dystrophin,” Dr Odero explained.
“This protein is supposed to ensure that muscle integrity is in order. When it is missing, muscles get damaged during use, and it is a progressive process.”
He noted that as the disease advances, muscle tissue is gradually replaced by fat and fibrous tissue, leading to severe loss of function.
“Eventually, the person loses the ability to walk. And this not only happens in the skeletal muscles; it also happens in the heart muscles, resulting in heart dysfunction,” he said.
According to Dr Odero, the condition often begins to show signs early in childhood, although it can be missed at first.
“Usually by two years, you can suspect it, but the key thing is that these children tend to trip and fall a lot,” he said. “As the weakness worsens, by six or seven years they have difficulty walking, and without treatment, by the time they are 13 or 14 years old, they have lost the ability to walk independently.”
He added that one of the early warning signs is difficulty rising from a sitting position.
“They cannot get up comfortably without holding onto something or literally climbing on themselves to get up,” he explained.
Genetic nature of the disease
Dr Odero also highlighted the genetic nature of the disease, explaining why it predominantly affects boys.
“It is an X-linked condition. Females have two X chromosomes, so if one is affected, the other can compensate. But boys only have one X chromosome. If that one is affected, they lack that protein completely. That is why it is the boys who manifest the disease,” he said, noting that women are typically carriers.
As the disease progresses, patients face multiple complications affecting different body systems.
“First, they lose the ability to walk. Then the heart muscles become weak, and eventually they develop heart failure,” he said. “We also require muscles to breathe, so as the disease progresses, their ability to breathe and even cough out secretions is reduced. They get chest infections and can go into respiratory failure.”
On treatment, Dr Odero said there is currently no widely accessible cure. “There is something called gene therapy, but it is only available for some patients, and it is very expensive—it costs tens of millions of shillings and is not done in the country,” he explained.
Instead, management focuses on slowing the disease.
“We use steroids like prednisolone and deflazacort. They reduce the rate of muscle damage and delay loss of ambulation,” he said, adding that the treatment must be continuous.
However, he cautioned about the side effects. “They can cause weight gain, increase the risk of infections, raise blood pressure and blood sugar, and even change physical appearance.”
Supportive care, he emphasised, plays a critical role. “You need a very skilled physiotherapist because these muscles are easily damaged,” he said. “The aim is gentle physiotherapy to prevent contractures and help with breathing.”
As mobility declines, assistive devices become necessary. “Most of the time when they lose ambulation, they require a wheelchair for mobility,” he noted. “There are also devices like orthoses and corsets to support joints and prevent spinal deformities.”
Author: Viola Kosome
