A few years ago, Muthamia was getting ready to welcome her second child. The pregnancy had no complications at all and her son Ferdinand Mutugi born very healthy.
All was fine in the Njuguna household until the boy developed a peculiar walking style.
“He would push his left foot ahead while walking and he didn’t seem to quite stand up straight,” Muthamia says.
Later, Ferdinand began falling while walking. He also started having a hard time standing up from a sitting position. Climbing stairs became a hardship and he couldn’t run as fast as he used to.
He would get tired very fast and even started walking on his toes. They took him to several hospitals and he was diagnosed with Duchenne muscular dystrophy.
Duchenne muscular dystrophy (DMD), is a genetic disorder characterised by progressive muscle degeneration and weakness due to changes in a protein called dystrophin that helps keep muscle cells intact.
Not ones to lose hope, the determined parents began taking Ferdinand for physiotherapy, hopeful that they would salvage the situation. In her free time, Muthamia would comb the internet seeking more information about the disease that was ravaging her son.
When Ferdinand was 10, the disease got more intense. He couldn’t walk on his own and would support himself on walls and nearby items in order to move. Eventually, he had to be confined to a wheelchair.
Getting the wheelchair for Mutugi was a particularly difficult decision for Muthamia. It hurt her deeply that her son who was once a playful and healthy boy was now deteriorating in front of her and the worst part was making him understand his condition and the changes he was experiencing. The struggles did not stop there, as teachers and people around him also did not understand his condition.
Today, Ferdinand at 15 is a calm teenager who excels in academics. Every year since 2013, Ferdinand has been going twice a year for Stem Cell Therapy. The treatment helps boost the vitality of his muscle cells. The stem cells are injected into the affected areas and this prevents the condition from getting worse by delaying the progression of the disease. If he had not been receiving the stem cell treatment, perhaps the situation could have worsened.
To manage the condition, Ferdinand has to do occupational therapy and physiotherapy to ensure the muscles don’t contract.
As Ferdinand grows into a young man, his mother faithfully hopes for a brighter future. “To parents with sons like mine, I ask that you don’t lose hope. Acceptance takes time. I cried for three years until I realised that the only way to help my son is to give him the care he deserves.”