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.
As with many medical conditions, raising a child with SMA is challenging because it carries both a physical and emotional toll. Now imagine having two children with this rare disease.
His mother is the principal of the Al-Himham School, his father a public relations executive. While he was at Kennedy Krieger, his parents and several aunties—always gracious and attentive—never left his bedside. Back in the UAE, the rest of his extended family took advantage of the power of technology to stay in constant communication with Mohammed using Skype. I would wave and smile at them, through Mohammed’s computer, whenever I came into his hospital room. Even when separated by thousands of miles, you could feel their love. Once fully healed and feeling strong, Mohammed returned home. His mother, in her knowing way, said that we would meet again.
That day came in 2011, when the family again returned to the U.S. so that Ahmed (who is better known as A.J.) could have the same surgery as his brother. Unfortunately there were complications, and I went to meet with A.J.’s parents in the intensive care unit of a nearby hospital, where he was still very ill. When I told them I was looking forward to A.J. coming to Kennedy Krieger when he was well enough, I could see the relief on their faces.
Soon, A.J. was here with us as an inpatient, with the same engaging smile as his brother. Both boys attend Ras Al-Khaimah English Speaking School, so it’s not surprising that A.J.’s English was flawless as well. A.J. had a long stay with us, and our nurses, techs and therapists were his biggest fans. He taught our respiratory therapists how to speak some Arabic and often played tricks on staff using his beloved iPhone. His love of Lady Gaga was infectious. In fact, on the day of his discharge, the nurses serenaded him with their rendition of her song, Paparazzi. When the time came, I was happy to see A.J. and his family return to the UAE. I can only imagine his parents’ relief that the long medical journey that took them so far from home was finally over.
I am inspired by these two young men who despite their physical limitations, place no limits on their aspirations for the future. Mohammed is now 14 years old and in 10th grade. He loves school, especially physics. His goal is to become a nuclear engineer. At 12 years old, A.J. is certain that he wants to be a lawyer.
Before he left Kennedy Krieger, I asked A.J. and his parents if I could share their story on this blog. They agreed, but my favorite memory of the conversation was how A.J. was especially excited because he wanted to show up in the search results if someone “googled” him. I am happy that this blog can make that small dream come true, but I know it won’t be the last time that you’ll be reading about A.J.’s and Mohammed’s dreams and accomplishments.