Jy'reece is a 1-year old with epilepsy, being raised by his sole custodian (his maternal grandmother), Amanda Swink. He lives in the home with his sibling (male twin) Josiah. The epilepsy has caused many changes in this family's routines and living arrangements. Amanda now has to travel more than 60 miles for the child's medical care. Jy'reece's epilepsy can be unpredictable, with seizures occurring at any time; causing disruptions in mealtimes, bedtimes, and family activities. His sibling has been able to adapt to these changes, but has been challenging. Amanda has devoted a significant amount of time and attention to managing the child's seizures, medication regimen, and caregiving responsibilities. It is emotionally and physically draining, causing an impact on her ability to fulfill other obligations, such as work, household chores, and regular daily activities. She feels stressed, guilt and helplessness, with constantly worrying about the affects of this on the children. She doesn't want his sibling to feel neglected because of the increased attention towards the epilepsy. To mitigate all the stressors on the family, they do attend support groups and work with mental health professionals at Norton Children's.
The out of pocket expenses has increased and requires Amanda to devote her efforts towards seeking financial resources to manage the child's treatment. THIS FAMILY HAS EXHAUSTED ALL FINANCIAL RESOURCES IN THE LOCAL AREA. There are very limited resources and funds offered, and the medical costs for treatment, hospitalization, surgery, rehabilitation, and ongoing care has significantly impacted this family. They have used savings to cover what insurance does not cover. Loss of income due to the severity of the illness, significantly reduced their ability to work because of the need to take time off of work. The increased expenses such as transportation costs for medical appointments, home modifications, and the cost of hiring additional help. The long-term impact will be even more significant, as the family faces the costs of ongoing rehabilitation and support services.
With managing the seizures, his parents have to be vigilant in monitoring him and administering rescue medication as needed. They have learned how to recognize different types of seizures and how to respond to them appropriately. Medication management is needed for Jy'reece, and his epilepsy requires long-term medication to control seizures. He requires his medication on a consistent schedule, and constantly watched for any possible side effects. To ensure this child's safety, they had to baby-proof the home, make sure he always wears a helmet or protective gear, and avoid activities or environments that could trigger seizures. Amanda is worried about the child's safety and feels helpless and overwhelmed at times. She has been provided support from healthcare providers and support groups to help cope with the emotional impact of epilepsy; But there is not much financial support for his treatment, medical expenses, medications, diagnostic tests, and hospitalizations.
The impact on the family is great and very time-consuming. They are grateful for Norton Children's, as they strive for open communication, offer emotional support and guidance with respite care to help mitigate the impact on family dynamics. But this family's needs continue to grow financially and we appreciate any help you are able to give. Thank you.