Aliyah

Aliyah is a beautiful young woman who loves to bake and dreams of owning a bakery someday. She did not have an easy start at life. She was born 8 weeks early, weighing 3 lbs, 10 oz. She was born with numerous health issues, including tracheo-esophageal fistula/esophageal atresia (TEF/EA), a hole in her heart, a bleed on her brain, two fused ribs, and two fused vertebrae. Aliyah has had to face many challenges in her life. To date, she has had about 94 surgeries. Aliyah has been treated in Boston for severe tracheomalacia and bronchomalacia. Because of her frequent bouts with aspiration pneumonia, her lungs are filling with scar tissue and nodules.

Aliyah does not let that stop her. She loves to sing, has performed in talent shows, and has sung a solo in church. She is a very bright light to those around her, and many people look up to her for her strength and endurance. However, there is often pain hidden in her eyes from all that she struggles with. She doesn't look different from most kids her age—her numerous scars are hidden from view.

~Amy, Aliyah’s Mom

VACTERL Association

VACTERL association is a disorder that affects many body systems. VACTERL stands for vertebral defects, anal atresia, cardiac defects, tracheo-esophageal fistula, renal anomalies, and limb abnormalities. People diagnosed with VACTERL association typically have at least three of these characteristic features. Affected individuals may have additional abnormalities that are not among the characteristic features of VACTERL association.

Defects in the bones of the spine are present in 60 to 80 percent of people with VACTERL association. These defects may include misshapen vertebrae, fused vertebrae, and missing or extra vertebrae. In some people, spinal problems require surgery or cause health problems. Sixty to 90 percent of individuals with VACTERL association have narrowing or blockage of the anus.

Artist: Lauren Rudolph