Category Archives: Spinal Muscular Atrophy

Mohammed and Ahmed Al-Ali are brothers from Ras Al-Khaimah in the United Arab Emirates (UAE). Both of their lives have been greatly affected by a diagnosis of spinal muscular atrophy (SMA), a condition that brought them half-way around the world in search of help.

SMA is a rare disease in which nerves in the spine become progressively weaker. In its most severe form, SMA can cause death in infancy. However, many children with milder forms can live long and fulfilling lives, despite challenges with scoliosis, breathing and the likelihood that the need for a wheelchair will limit their mobility.

Although Mohammed and Ahmed struggle at times with their limited mobility, I know that their futures are very bright and far from limited.

I first met Mohammed, the eldest of the pair, in 2009 when he came to Kennedy Krieger’s inpatient unit after a successful spinal fusion surgery at Johns Hopkins Children’s Center. The first thing I noticed about Mohammed was his smile; the second was his flawless English. But perhaps the most noticeable thing was Mohammed’s amazing family. Continue reading →