Kumail was diagnosed with spinal muscular atrophy (SMA) and started Spinraza in an international trial.
As The Herald Sun reports, he began the treatment at six weeks old before he even started showing any symptoms. Kumail became the first Australian child to have access to the new gene therapy to combat his SMA. He received a spinal cord injection every four months. The purpose of the injection was to replace the missing motor neuron proteins that are necessary for the nerves to control muscles.
At 12 months old, his doctors were stunned by the results. Kumail’s physiotherapists cried, for a good reason. As a matter of fact, they expected his whole body to be limp and thought he would be struggling to breathe.
Instead, he fought the SMA with Spinraza and reached all of the developmental milestones. Kumail and other babies are becoming stronger and have surpassed milestones others with the condition have not come close to.
Mohammad Wakil feared that his son Kumail, would have an outcome like Mohammad’s 8-year-old daughter, Rubab. In any case, Rubab has SMA and was in a wheelchair by the time she was 12 months old from the same progressive condition. Mohammad couldn’t believe his son was crawling and moving his arms and legs just like a child would normally do. Furthermore, he hopes that his son will be able to stand on his feet one day.
Although it is not a cure, Spinraza can help decrease the progression of the disease. Further research must be done to improve the lives of children with SMA.
What have been your experiences with SMA or Spinraza? Share with us!
