Diagnosis’ Shadow (Ongoing)

Eight-year-old Malcolm Alaimo is facing his 33rd sedated procedure in the next week. He was born with Congenital Cytomegalovirus (CMV), which results in permanent disabilities for somewhere between 1,000-1,500 newborns per year (10% - 15% of .5% of newborns). Malcolm was born with extensive brain damage, putting him into an even smaller cohort of this small fraction. Stemming from CMV, Malcolm has Cerebral Palsy (CP) and Autism. He is bilaterally deaf, has had issues with his heart, and had a hemispherectomy in 2020 to address his frequent seizures.

Three generations of women under one roof provide all of Malcolm's care. Danielle is Malcolm's mother and full-time caregiver, supported by her 13-year-old daughter, Boston, and her mother, Kathy. In addition to the typical stressors of being a teenage girl, Boston has a herculean duty to her brother and mother, which is becoming a core piece of her developing identity. The title, "In the shadow of a diagnosis," comes from a phrase Danielle used to describe siblings of individuals with disabilities who live in the shadow of their disabled sibling.

Despite the rareness of Malcolm's condition, many of Alaimo's challenges are unfortunately familiar for families raising children with disabilities. This story isn't just about how the Alaimos are unique but about highlighting the common thread connecting families forced to fight for their children's care, exploring the impact of this care on the dynamic between family members, and reflecting on the responsibilities of our institutions.