Gifted Greg believes he will walk one day

Destiny writers told Greg Ngari that he would unlikely live past his third birthday because of his condition  — spinal muscular atrophy, a rare muscle wasting disorder.

Born in 2003, he has lived in hospitals more than at home.

Healthy Nation finds him lying on a brown couch at his parent’s house in Juja, Kiambu County. 

His face brightens when we enter their house and his mother, Rosemary Wanjiku, shows us where to sit. 

Greg flips through channels on the television and he settles on one that he watches throughout the interview. 

Rosemary explains that her son grew up normally and did not have any serious challenges until he was about a year and five months old when he started growing weak. He would stand and drop and that became a worry. 

Greg’s parents could not figure out why their son kept dropping even when he supported himself by the table or a couch. Rosemary and her husband had to take their first-born child to hospital for a check-up. “We took him to a paediatrician who first checked his calcium levels and the results showed that he had normal levels,” Rosemary narrates.

On another hospital visit, the worried parents went to an orthopaedic surgeon, who suspected there was something wrong with Greg.  He asked them to take a muscle biopsy test, which still did not give the correct diagnosis. They visited a neurological paediatrician who told them it could be a nerve condition and advised that they take Greg’s DNA samples for a test.

“A month later, he was diagnosed with spinal muscular atrophy type 1 with a nerve disorder,” a downcast Rosemary reveals.

Spinal muscular atrophy is a rare muscle wasting disorder that is inherited from parents. However, for Greg’s case, results from the DNA showed that none of his parents were carriers of the gene.

“We were wondering how it came about. The doctor gave us an analogy of a slip, one time you could be walking and you miss a step and drop. It is not intentional, but it happens and it’s irreversible.”

At the time, medics told Rosemary that there was only one known case of his son’s condition reported in the country. Unfortunately, the infant who had it died before he turned three.

“I did not believe my son would die that early. I knew he would live this long. I did a lot of research. We took him for physiotherapy regularly and at the age of six, he would even ride a bicycle and sit upright. He wasn’t as slender. My son was a plump child,” she narrates.

Doctors also told Rosemary and her husband that the muscle wasting started from the legs, upwards.

When his son turned 11, the condition worsened and it now affected almost all of his organs, with the respiratory system being the worst affected.

“His hip joints dislocated and it was so painful that he got used to it. The pneumonia attacks made us hospital regulars,” she says.

In a year they could only spend a single month out of hospital. His right lung collapsed and he only used the left one. 

“His stomach moved to the left side of his body. He is also left-handed,” her mother says.

At the age of 17, he weighed 22 kilos. He struggled eating as his jaws became weaker every day. 

Because he could not eat, medics advised that he be fed using gastrostomy and in two years, he gained three more kilogrammes. 

“Right now we feed him using a syringe because he still cannot chew. We have to blend the food or give him fluid food rich in nutrients. Still, he finds it hard to swallow,” says Rosemary.

Greg, now 19 years old, only attended school for less than a year when he was 10 years old, but he could not keep up because of the frequent pneumonia attacks. 

Even so, he told this writer that he yearns to go to school. “I love reading. My cousin tells me that I am sharp. I had to learn reading by watching movies,” he says.

When he sits alone at home, he’s either watching the TV or on his phone learning tricks on technology. He says he loves history, which is why he watches Discovery Channel or Da Vinci.

“I help my siblings with homework despite not having had the privilege of going to school. I am just gifted and I believe I will walk one day,” an optimistic Greg says. But he hates it when people gaze at him when he goes out with his parents and siblings.

“People stare at me as if I am alien. I usually look back and say ‘Hi’ until we become friends. I don’t think I have any problem. It is all in the mind and I know I am okay, which is why I have many friends,” he says.

He adds that he desires to write a book one day, and even have his own school of people like him.

Greg believes people like him have ideas but they find it hard to implement them. To him, it doesn’t have to be something physical because of the body’s limitation.  “But, if you can think straight, all you have to do is to come up with a plan. I have had many near-death experiences but by the grace of God I am still alive and I know it is for a reason,” he says.  

Rosemary has since learnt to cope with his son’s condition.  

“At night I have to turn him because he cannot sleep in one position. On a bad day he calls me at least three times and, on a good day he calls me twice,” narrates Rosemary.

She is happy that Greg’s pneumonia attacks have reduced.

She now gives hope to parents whose children have a similar condition, having lived with his son for almost two decades and pulling through it all. 

Dr Juzar Hooker, a consulting neurologist working at Aga Khan University Hospital, explains why Greg has the condition despite his parents not being carriers as it is a genetic condition.

“It is a genetic disease which could be modified by some other genetic factors. There can be new mutations that occur on rare occasions. But in the vast majority,  each normal parent has one abnormal gene and the combination of two abnormal genes results in a child with that condition (spinal muscular atrophy),” he explains. Dr Hooker says there is need for a paradigm shift in regards to innovative forms of treatment and cheaper options.

“Treatments are available — one is given by lumbar puncture regularly, another one is administered by mouth, and one is in the form of gene therapy. They are all extremely expensive. We need to have a government and patient advocacy group-based push to have the treatment given out on a compassionate basis, and/or at concessionary rates, with public funding,” he says.

Wasting of muscles, which is a key symptom for people suffering from spinal muscular atrophy, means reduction in muscle mass. Dr Hooker explains that the motor nerve cells slowly die out and reduce in number, resulting in muscle weakness and wasting.

While Greg’s mum wondered why her child had frequent pneumonia attacks, a study published by the Orphan Journal of Rare Disease on the management and current status of spinal muscular atrophy also found out that most patients with the condition  have respiratory issues.

“Multiple admissions in younger patients have a central role in increasing medical costs of the disease. The majority of these admissions were related to respiratory issues derived from the disease in addition to any patients with respiratory distress that could contribute to this outcome” said the study.

The study also found out that the condition affects more men than women but the researchers  put a caveat because the database was not enough to make that conclusion.

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