Ansh, a vibrant five-year-old residing in Surrey, B.C., faces a daunting battle against diffuse intrinsic pontine glioma (DIPG), an exceptionally rare and aggressive form of brain cancer that tragically has no known cure. His youthful energy, once brimming with the boundless joy of childhood, is now shadowed by the relentless progression of this devastating disease. The once-simple acts of playing with his twin brother and displaying his Christmas presents are now tinged with the heartbreaking awareness of his precarious health. Ansh’s story is one of resilience and the unwavering love of a family grappling with an unimaginable burden.
Last spring, Ansh’s parents, Chintan Shah and his mother, noticed unusual symptoms that prompted them to seek medical attention at BC Children’s Hospital. After a series of comprehensive tests, the devastating diagnosis of DIPG was delivered, shattering their world. The tumor’s location in his brainstem makes surgical removal impossible, leaving radiation as the only viable treatment option to slow the cancer’s progression. While the radiation did offer temporary respite, Ansh was ultimately discharged home, where his condition continues to deteriorate, demanding constant care from his parents.
Ansh’s mother has become his primary caregiver, her life revolving around his increasing needs. His mobility is declining, making him prone to falls, while his speech has become slurred and difficult to understand. Swallowing, once a simple act, is now a struggle. The constant vigilance and attention required to care for Ansh leave little time for anything else, compounding the emotional and financial strain on the family. The weight of this responsibility falls heavily on his mother, who struggles to balance her unwavering dedication to Ansh with the practical demands of managing a household, caring for his twin brother, and coping with the looming financial uncertainties.
The family’s financial situation has become increasingly precarious. With his mother unable to work due to Ansh’s intensive care needs, the family’s primary source of income, employment insurance, is rapidly dwindling. Desperate for some relief, they applied for respite care, a service that would provide temporary care for Ansh, allowing his parents a brief reprieve from the constant demands of his care. However, they were met with a devastating blow – a three-year waiting list for the service. Given Ansh’s grim prognosis, three years is a lifetime they likely don’t have. The family feels abandoned by the system, left to navigate this unimaginable journey with minimal support. The irony is not lost on them that they, as taxpayers, are denied the very services they contribute towards.
The family reached out to Global News to share their story, hoping to bring attention to the plight of families facing similar challenges. They question the government’s apparent lack of concern for families like theirs, struggling to cope with the overwhelming demands of caring for a terminally ill child. While the staff at Ansh’s school have been incredibly supportive, providing extra assistance whenever possible, the family is reluctant to rely too heavily on them, understanding the limitations of the school’s resources.
The financial strain adds another layer of stress to an already unbearable situation. Instead of cherishing the precious time they have left with Ansh, his parents are consumed with worries about mounting bills and the possibility of losing their home. A GoFundMe page set up by friends has provided some temporary relief, but the long-term financial outlook remains bleak. Their hope now rests on an expedited approval for respite care, a lifeline that would offer a much-needed respite from the relentless demands of Ansh’s care.
Amidst this heart-wrenching reality, Ansh’s spirit continues to shine. Following his stay at BC Children’s Hospital, he was chosen to be featured as an elf in the hospital’s 2025 calendar. Although it’s a calendar for a year they may not see together, the family has proudly displayed it in their home, a poignant symbol of Ansh’s enduring spirit and a treasured memento of his brief but impactful life. Despite the overwhelming challenges they face, the Shah family remains steadfast in their commitment to providing Ansh with the best possible care and ensuring that his remaining days are filled with love, comfort, and as much joy as they can muster. Their story underscores the urgent need for increased support and resources for families facing similar challenges, ensuring that no parent has to endure the unimaginable pain of losing a child while simultaneously battling a broken system.
