Global Genes recognizes that individuals with rare disease face challenges that patients with more common diseases do not. In order to assist patients with rare disease in navigating through the healthcare system, Global Genes has developed a series of RARE Toolkits to help plot the course from diagnosis to treatment and beyond. In our first installment, the RARE Toolkit “Parenting a Child With Life-Limiting Illness,” we focus on the special concerns of families of children with rare, disabling disease.
When a child first receives a diagnosis of life-limiting disease, parents often have many questions about their child’s prognosis, the implications for the immediate and long-term future, and the impact that the disease will have on family and friends. Often, special equipment will be required for the care of the sick child, further complicating the family dynamic.
The financial consequences, in terms of both direct costs and possible loss of income
(with one or both parents in some cases being required to stay home full-time or to work reduced hours in order to care for their child), can result in the need for support from the government in the form of Medicare/Medicaid or from other sources of financial assistance. Importantly, the Affordable Care Act provides certain guarantees to care but does not require that insurance companies act as allies. Parents must be prepared to fight denied claims to ensure that their child receives appropriate care.
With all of these obstacles, parents will need support. The “Parenting a Child With Life-Limiting Illness” RARE Toolkit provides parents of children with rare disease with resources for addressing their medical, emotional, and financial concerns. Not only parents but also extended family and friends should download this RARE Toolkit to raise their awareness of life-limiting illnesses and to discover opportunities for providing the best possible outcomes for children with rare, life-limiting disease.