Finally at eye level!
Last year, her parents Suada and Rasim would never have thought that little Ajla who has the rare disease SMA type 1 would ever be able to stand.
5q-associated spinal muscular atrophy is a motor neuron disease, which affects certain nerve cells in the spinal cord. These nerve cells transmit impulses to the muscles which are responsible for crawling, walking and head control.
Fortunately, a new drug came on the market in 2021 that was developed to stop the progression of the disease in some patients. “Zolgensma” is currently considered the most expensive drug in the world at around £1.79 million per dose.
Ajla received her long-awaited dose in May 2021 at the University Hospital in Bonn, Germany. Since then, the three-year-old has made great progress. For example, she can now sit independently and is also able to stand using our supine standing frame till. “It was the first time Ajla was able to stand,” says mum Suada. At first Ajla was unsure about till. but when she was positioned in the standing aid by our product specialist Hauke Fistera, she relaxed.
Standing is fun!
It didn’t take long for Ajla to ask for her mum’s mobile phone. „She uses the phone better than I do,” her mother admits with a smile. Of course, scrolling through family photos or watching funny videos is twice as much fun standing up.
And it’s not only in this respect that the standing frame offers the bright girl a completely new perspective. Mama Suada knows: „Ajla loves to sing“ All these activities are encouraged even more when she is standing, thus helping Ajla to participate much better. Now the family hopes that the health insurance company will give the green light for the till. and that Ajla will soon be able to learn English at eye level with her three big brothers.
