Empowering Envera

Greetings,

My name is Joelle, and I would like to share a story about a little girl named Envera Omercevic. I became acquainted with Envera and her family in early 2017, when I was commissioned to provide home-bound instruction for her via Chicago Public Schools. I currently serve as a special education teacher in one of the district’s elementary schools located on the city’s northwest side. 

Envera has Leukodystrophy; specifically Hypomyelination of the Acute Basal ganglia and Cerebellum, or H-ABC. H-ABC is a genetic illness, one of the rarest of its kind, as only 200 children worldwide are currently diagnosed. H-ABC affects the white matter of the brain, inhibiting the reach of neurological messages to the rest of her body, thus impacting muscle development, mobility, and other basic functions. She was diagnosed at 21 months of age, although symptoms began to manifest when she was just 6 months old. H-ABC is degenerative and terminal. There is no known cure. 

Envera resides in Skokie, Il with her mother Merjem, her father Ferid, and her brother Muhamed (age 13). Her eldest brother Nedzad (17) currently resides in their native country of Bosnia and attends a vocational nursing program, for which Merjem and Ferid are paying full expenses (housing, food, books and supplies, etc).

Envera’s condition has progressed to such a point as to significantly impact her mobility. She is no longer able to walk, and the mobility devices the family does have are inappropriate or dysfunctional, as her core strength is severely limited. In order to mitigate the growing loss of functionality, Envera requires numerous therapies and equipment, all for which she has been repeatedly denied by the family’s insurance company, despite physicians’ prescriptions issued for such services. Additionally, due to the rarity of Envera’s condition, only one research hospital exists for treatment (Children’s Hospital of Philadelphia or CHOP), which requires monthly travel. 

The denial of Envera’s equipment and services have compelled her mother Merjem to function as the primary caregiver for her daughter (Envera does not qualify for home nursing care as she is not <yet> tube fed). Consequently, Envera’s father is the sole breadwinner. He too is in a poor state of health and has very limited English language skills, which in turn compromises his earning potential. His monthly earnings do not currently meet the family’s significantly mounting expenses. 

In spite of these grave troubles, I could not be privileged to know a more gracious, humble, and loving family. They have welcomed me into their fold not only as Envera’s teacher, but as a trusted friend and confidante, and it is in this capacity that I most sincerely appeal to you to consider donating to assist this beautiful little girl and her family. They deserve the opportunity to provide the best care for their children, and to offer Envera the best quality of life for the amount of life she has left, unless/until a cure for this disease is discovered. 

Thank you.