Aria

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Aria has been in and out of the hospital because she has Neurofibromatosis. Her mother is a single mom, who had a hard time finding job due to her physical deformity from the same condition. Social protection and service availability for both children and single parents are crucial for the healthy development of children.
‘Behind the Photo’ - The Photographer’s Story
  • A young beautiful child poses and smile for the camera, pictures tells many meaning but reality have hidden deep fears and pains also struggles right at the beginning of her childhood.
  • Aria, six years old have been in and out of the hospital more than any children in Canada. The day she was born everyone knew that she has a genetic disorder called Neurofibromatosis; there was a 50% chance of passing on the disorder to the child if one parent has a history of this disorder, in which her mother has this disorder. It is one of the most serious neurological disorders, where several tumours will grow along the nerves anywhere in the body including the brain and spinal cord. Neurofibromatosis tumours can disfigure the physical appearance of the person, may also affect their learning disabilities and cause social isolation.
  • As a young baby, Aria’s body was covered with light brown flat spots on the skin, variable shapes and sizes. It is called the café-au-lait spots looks like a birth marks. Aria’s family love her with a passion and treated her like a normal child.
  • As she turned one, Aria was diagnosed with tumour on her optic nerves, which may cause some blindness or disfigurement in one eye. She under gone 53 weeks chemo therapy, which shrank the tumour. However, she is slightly blind on her right eye and has a hard time finding her balance. As a result, she can not run like any other child or balance herself on the bike due to his disorder.
  • Every time she was treated for chemo. She pleaded her mom, “No needles and no more hospital.” Her mom tried her best to comfort and convince her that everything will be fine and promised to get her a little toy whenever she goes for medical appointments.
  • Aria’s mother is a single mom, who had a hard time finding job due to her physical deformity. She has neurofibromatosis, had similar café-au-lait spots and small tumours on the skin like a visible large pimples spots all over her body. Whenever she goes out the public would stare at her in disgrace, which makes her uncomfortable and sense of not belonging in the community. Also, her place of work were not pleased with her constant absences or being late for work because she has to take her own daughter to the hospital quite often. Aria also has neurofibromatosis and underwent 53 chemotherapy to control the optic tumours in her eyes.
  • Aria’s second birthday, she was again diagnosed with tumour on her brain, by miracle it shrank and disappeared. This does not mean the hospital is done for Aria. Hospital is part of her life, where she will continuously under go regular check up from her optometrist, oncology and other specialists because eventually these tumours will mutate and will become cancerous.
  • At age six, Aria’s mother had to spend a $1,000 dollars for her pocket to purchase a ¾ back brace for her scoliosis. Aria had to wear this brace for the next three years, but in the matter of time Aria’s mom will have to spend more money for braces due to her growth.
  • At school or at the day care, Aria is wearing this brace everyday for twelve hours. She has difficulties in bending down and cleaning after herself up after using the bathroom. Her classmates make fun of her and laugh at her due to her smell and awkward way of running because she is slightly blind and can’t run normal like any other children.
  • Neurofibromatosis patients are rare and the public must be educated and be more sensitive to this disorder. They need financial assistance for them to live a better life.