"Making Lives of Families with Special Needs Children Better" The mission of The Jocelyn Tangitau Foundation is to seek and partner with organizations focused on providing palliative and respite care services and support -- an interval of relief for families with children suffering from life-threatening, irreversible, and terminal health conditions. Our philosophy of care addresses not only physical pain but also the emotional, spiritual and social needs of the child and family. This enlightened approach to care is of critical importance, beginning at diagnosis and continuing throughout the entire course of a child’s life.
Description
The Jocelyn Tangitau Foundation is a 501(C)3 public charity inspired by the story of the Tangitau family. Vuki and Leilani's youngest daughter Jocelyn was born on January 20th, 2010. At four months of age, Jocelyn showed concerning signs of hoarse breathing and weak muscle strength. After many doctor visits and respiratory treatments, Jocelyn was admitted to the ER at Cardon Children’s Hospital on July 7th, 2010. She tested positive for Spinal Muscular Atrophy (SMA) Type 1. There is no cure for SMA and the prognosis is poor for babies diagnosed with Type 1 SMA. Most are not likely to survive more than two years. Today, this is still often true. Having two other perfectly healthy children, no support system, and feeling overwhelmed by their situation with the challenge of Jocelyn’s condition, the Tangitau family has had to seek resources on their own, to aid them in their fight to provide the best quality care for Jocelyn. Jocelyn has beaten her prognosis at the age of 5 with the limited resources available in the State of Arizona for SMA children. Through the Jocelyn Tangitau Foundation, the Tangitau family hope to increase visibility and advocacy for SMA children, assisting other families like them in seeking organizations to support and help others manage and cope with their child’s care. The Tangitau family is set on establishing a remedial care program for families to receive the care and support they need and deserve.
