He mumbles as if he has something urgent to say but cannot find the right words. There are moments when he stares into space; lost in his own world. When he wants to move, he signals at his mother Nelly Achieng to carry him.
She is his sole caregiver and says it is one of the most challenging experiences.
“My son Phillip has a rare condition called Duchene Muscular Dystrophy (DMD). Every day, I watch his health deteriorate yet there’s nothing I can do,” she says.
Tragedy struck Achieng’s home five times. She had five sons, and all of them suffered from the rare genetic condition. Three of them have since died, and she watches painfully as the remaining two agonise in pain.
For the last 30 years, she says motherhood has brought her nothing but tears and worry.
“My husband left after people started saying I am cursed. The thought that all my children would suddenly fall sick, stop walking and slowly lose their body function is something not many people have experienced,” she says.
With every child she buried, she says a part of her died. She hopes that with physiotherapy, her remaining sons will live longer.
Dr Allan Otieno, a pediatrician at Kenya Medical Research Institute (KEMRI), says DMD is a rare disease that weakens the muscles and eventually wastes them, making them less flexible over time.
“It affects boys only, but its carriers are females who have been found to have one abnormal X chromosome,” he says.
Dr Otieno says there is a high mortality rate of the patients unless they are subjected to continuous physiotherapy. He adds that the cause of death is always respiratory failure.
He advises that couples should go for genetic testing before having children, but he is quick to add that the test is very costly in Kenya.
Achieng says caregivers have to deal with the emotional torture that comes with being diagnosed with a rare disease other than the cost.
“I remember sitting in the hospital and watching in shock as the doctor told me that my sons will never get better because their condition has no cure,” she says.
She says some of the defining symptoms of DMS include painful joints, losing the ability to walk and talk, and slower milestones compared to agemates.
For now, Achieng waits for the unknown. She says she can barely afford therapy, and the sounds of the children crying out in pain due to aching muscles torment her. Her older son has outgrown the wheelchair that was donated by a well-wisher, and he spends most of the days on the ground.
“He complains of chest pains, doctors have advised that I keep him warm. He also needs a special wheelchair but I cannot afford it,” she says.
Nancy Koki whose baby suffers from Spinal Muscular Atrophy (SMA) says her son needs 24-hour nursing care, daily chest physiotherapy and regular occupational therapy.
“We also cater for the cost of the ventilator, monitor and suction machines, which raise the electricity bill through the roof,” she says, reinforcing the fact that caring for patients with rare diseases is extremely costly.
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