Lucas is a 13-year-old boy with a very rare genetic condition known as CNKSR2. His family is still fighting tooth and nail for the specialized care he needs to meet his multidisciplinary challenges. Only 1 in 80,000 children globally are diagnosed with this genetic disorder. As a result, Lucas is completely non-verbal, needs a feeding tube, and suffers from chronic seizures. His condition requires 24/7 supervision and care, putting an incredible strain on his parents.
Lucas needs 24-hour care, so that means three care workers helping him during the day. His family are campaigning hard for an NHS continuing care funding package. As a result, they think that overnight care is critical for his health and safety. Lucas’s parents, Andy and Becci, have always contended that he needs two caregivers to remain with him at all times overnight. They just want him to have the support he needs to control his epilepsy.
This is despite a nurse assessor on the council’s staff originally recommending funding for the overnight care. The number of carers needed was contested between the parents and the assessor. The family thinks they have no recourse and have been left hanging by this gap. Twenty other health, care, and teaching professionals have agreed that Lucas requires two overnight, specialized carers.
Since then, for the last three years, Andy and Becci have been sleeping on their living room floor next to Lucas. They do everything possible to take care of his needs, all the while doing their best to take care of themselves. They report surviving on only four to five hours of “broken sleep” each night due to the demands of caring for their son. This situation has pushed them to the brink as they navigate the complexities of the healthcare system in search of necessary support.
The emotional and physical toll that caring for Lucas has on his parents is taking a big toll on them. They face huge challenges in actually getting the funding. The family’s determination to ensure Lucas receives adequate overnight assistance highlights the broader issues many families encounter when dealing with rare medical conditions and the healthcare system.
