9-year-old Aliyah first came to us, paralyzed, incontinent, and unable to feed herself, from her home, 500 miles south, in April. She lives in such a remote area, it requires a 1-day bus ride, followed by 4 hours by foot or donkey to reach to her village. Her dad is a farmer. She has 2 brothers and 2 sisters – and her mom was about to deliver baby #6.
Aliyah had already spent 23 days in hospital in Addis Ababa with a bit of improvement, when she first was carried into our office. But she was incontinent of urine and stool, and was still paralyzed. She has signs of a skin condition called NF – neurofibromatosis, throughout her body. Perhaps a quarter of NF patients also have spinal deformities, and 5% of our spine patients have NF. Our NF patients are among our most difficult and complex. And Aliya she was among the worst of these – we categorize her as a “translocated gamma deformity,” which we have described in several severe patients.
Multiple physicians advised the family this was inoperable. But her dad heard about us, and came for a final opinion from Dr. Rick in the JDC Spine Program, the Saturday before Ethiopian Orthodox Easter.
On exam, Dr. Rick found she was hyper-reflexic, with bilateral upgoing toes and sustained clonus, all indicative of a great strain on her spinal cord. He determined that there was only 1 hope – trans-continental flight to FOCOS Hospital in Ghana, and months of traction to slowly realign her spine. A visiting doctor immediately pledged half the money. A matching fund gathered the rest.
Her dad obtained her passport. Normally, we’d consider sending her mom – who can better to take care of a paralyzed child? But her mom was about to deliver and was unable to fly.
Lemma, our great nurse, brought her to Accra, and helped her into her new surroundings. 4 holes were drilled into her skull, and she endured several months of traction, 23 hours a day. She then underwent spine surgery, which involved spinal fusion from T1-T7, instrumentation and placement of 3 rods.
After several weeks of physical therapy, she returned home. Her dad met her at the airport, crying. When he last saw her, she was paralyzed, incontinent, and unable to feed herself. Now she was slowly and proudly walking down the hill to the parking lot unassisted!
Hundreds of people showed up in her village to greet her, and her dad slaughtered an ox in thanks. Even now, relatives come every weekend to visit and support her growing family. She is enrolled in school, and even plays a gentle game of volleyball.
Kemal, her dad, made a special trip to his mosque to thank the Almighty for saving he daughter. And he specifically asked me to thank everyone who donated to help save her.
When Aliya returned home, she met her new brother for the first time. His name? Tofik – one who brings great luck! Many thanks to all our donors, without your help we could not even think of helping Aliya.