Most pediatric degenerative neurological disorders are life-threatening and incurable. Many, like GM-1, Tay-Sachs, and Sandhoff disease are genetic and fatal. They are also progressive, meaning that after prognosis, the effects of the disease become more pronounced until it overwhelms the child.
Because the brain controls the whole body, these diseases often affect many different organs and bodily systems, making care for these children a complex challenge involving many medical specialists and extensive care requirements. Treatments typically improve symptoms, relieve pain and increase mobility. Until cures are found, the best outcome is to provide the best quality of life and comfort available for the patient and family.
An incurable diagnosis in a child, coupled with the tremendous amount of care these patients require, creates a myriad emotional and medical challenges for parents, families and healthcare providers — not to mention supporters who wish to help. B Brave strives to provide blueprints that help deliver the best care possible while fostering a community that can help financially and emotionally support families who are enduring this challenge.