Zara is an 18-month-old currently diagnosed with Hydrocephalus. Zara’s Mother, Tamara, began noticing concerns during her final stages of pregnancy and began working with medical professionals during this difficult time to receive answers and build a plan to meet Zara’s needs upon birth. Hydrocephalus is a complex diagnosis that can lead to multiple outcomes across an individual’s life span. Hydrocephalus refers to an excess of cerebrospinal fluid which builds up in and around the ventricles of the brain, causing increased pressure on the brain. This condition can be genetic and/or associated with Developmental Delays such as Autism, Spina Bifida, Brain herniation, and brain bleed or tumors. Due to the complexity of this condition, the onset of symptoms can vary across an individual’s lifespan. Many toddlers and children experience the development of headaches, nausea, vomiting, fever, blurred/double vision, unstable balance, and poor coordination and gait issues. Further, irritability which can lead to further behavioral concerns, and seizure activity are common.
Zara’s young life has been marked with numerous medical appointments, starting with specialists at Children’s Hospital and leading to additional neurological visits as her condition continues to progress and additional concerns are noted. Tamara recently noticed a delay in vision/eye coordination in Zara, and is in the process of scheduling even more medical exams with neuro-ophthalmologists, in hopes of obtaining an early diagnosis that can lead to better outcomes for her daughter.
Tamara works full and part-time jobs in efforts to meet the financial and medical needs of her daughter. Due to Zara’s specialized needs in terms of child care, Tamara had worked with her aunt to become trained and provide ongoing child care to Zara on a daily basis. For the first year of Zara’s life, she spent many of her waking hours with her aunt as her mother worked multiple jobs and shifts, attempting to make ends meet and provide for the increasing medical and support need expenses of her daughter. Approximately three weeks ago, Tamara’s aunt passed away suddenly. The caregiver Zara had known for her first impressionable year of life was gone, and unexpectedly. Prior to her caregiver’s passing, Zara had made the progress of uttering 2-word statements with some delay noted, however, her family was elated at this progress! As of the passing of her caregiver, Zara quit making utterances entirely for several days, only to begin with screaming, crying and expressions of irritability, and no longer will speak the two-word statements she had learned from her caregiver.
Presently, Tamara is working with government and local agencies to navigate eligibility processes for program and habilitation assistance, however long wait lists for funding typically exist for many of these types of programs and agency supports. Out of pocket expenses for such programs can range in the thousands of dollars each day for the service alone. These limitations create enormous barriers for parents such as Tamara. Many individuals and families that face such barriers must deal with a lifetime commitment to prioritizing any and all resources strictly to daily needs and supports for their loved ones, and do not have the blessing and advantage that travel and life experiences can provide. Without these opportunities, individuals such as Zara do not have the opportunity to become explorers of the world around them by taking part in socialization, friendship and network building, stimulating experiences that promote integration, fun, and further neural synapse development. These are all integral features of improving one’s quality of life that often falls short for those that must deal with the reality that their day to day experiences are completely invested in arranging for care and support services. It is through the gift of giving via organizations and donations that seek to provide such exposure to opportunities for expanding self-esteem, growth, opportunity for choice, independence and personal breakthroughs that real quality of life can be achieved and that everyone can truly become explorers of their own lives and world.