The story of Ashley
Although Archer had some difficulty with feeding and gaining weight after birth, he was otherwise a healthy baby. At the age of six months he developed nystagmus, or a rapid involuntary eye movement. This first symptom began a year of doctor’s visits and testing that ultimately led to a rare diagnosis of Peroxisome Biogenesis Disorder at 18 months of age. Each child with PBD is said to “write their own story,” because each child can be affected differently. There is currently no cure for PBD and most children do not survive past age 10, although some can live into early childhood, the teen years, or beyond. Archer currently experiences cognitive delays, low muscle tone, and deaf-blindness due to his disorder.
Now, at age 7, he is a complete joy to our family! He brings a smile to all those who know him, and he constantly inspires others with his happy personality. We have been incredibly blessed with a support group of other families through the Global Foundation for Peroxisomal Disorders. At the GFPD Family and Scientific conferences, Archer is able to see doctors who are familiar with his disorder so we can learn about the latest developments, and provide him with the best care possible. He inspires us each day to smile, laugh, love, and treasure every moment together.