For many families, witnessing their children’s milestones is a joyous yet routine experience. However, for one mother named Christine, seeing her daughter Alison take her first swim was nothing short of miraculous. Born with a life-threatening condition that required a tracheostomy, Alison’s journey to this moment was long and fraught with challenges. This article explores the family’s struggle, resilience, and ultimate triumph over medical and bureaucratic obstacles.
Alison, now nine years old, was born with an underdeveloped airway, necessitating a breathing tube from birth. For years, Christine and her husband relied heavily on in-home nursing care to manage Alison’s complex needs. The tracheostomy tube required constant maintenance, and any mishap could be life-threatening. Despite these challenges, Alison’s parents remained hopeful that one day she would lead a normal life. Last summer, Christine witnessed a pivotal moment when Alison, who had undergone surgery to remove her tracheostomy, confidently jumped into a pool—a symbol of her newfound freedom and resilience.
The road to this moment was not easy. Christine recounts the difficulties they faced with California Children’s Services (CCS), a program designed to assist children with special healthcare needs. Initially, CCS provided crucial support, but as Alison grew older, the family encountered unexpected hurdles. One day, Christine received a letter denying Alison’s need for nursing care, citing it as “routine.” This decision left the family scrambling to appeal the ruling while continuing to provide essential care for Alison.
The appeals process proved to be a labyrinthine ordeal. Christine connected with an attorney through a friend, which helped secure temporary nursing care while they fought the denial. After months of back-and-forth communication with CCS and Medi-Cal, acquiring letters of medical necessity from Alison’s doctors, and presenting their case to a judge, the family finally won the right to continue receiving nursing care. This victory allowed Alison to undergo the surgery that ultimately freed her from the tracheostomy.
In May of last year, Alison successfully completed her final follow-up procedures and was finally able to breathe on her own. No longer needing a nurse, she embraced the simple joys of childhood, like swimming, that many take for granted. Reflecting on their journey, Christine expresses gratitude for the legal aid that made this possible but also highlights the systemic issues that many families face when navigating programs like CCS.
The National Health Law Program, recognizing the widespread challenges families encounter, created the CCS Due Process Toolkit to help others understand their rights and navigate the appeals process more effectively. Christine hopes that this resource will make positive outcomes more attainable for families across the state. Witnessing Alison’s transformation, Christine feels a profound sense of relief and pride, knowing that they have achieved what they always hoped for since Alison’s diagnosis at just two days old.
