Today’s Raise the Line guest has a simple but powerful message for medical providers, born of a mother’s heartbreak. “It's going to be rare in your career to meet a zebra but the impact you can have is phenomenal. An early diagnosis could make the difference between life and death for these children,” says Bethan Keall who lost her young daughter Matilda (Tilly) in 2022 to neuroblastoma, a rare cancer most commonly found in children. Because some symptoms of the disease can be easily attributed to other causes, early diagnosis is difficult, particularly if providers are not on the lookout for it. Tilly’s diagnosis of an aggressive form of neuroblastoma introduced Bethan and her husband to the unfortunate realities of a lack of funding and coordination in the UK around pediatric oncology. “For childhood cancer you really need as much collaboration among doctors as possible to understand how treatments can get better because there are relatively few cases,” she explains to host Lindsey Smith. In coping with Tilly’s tragic death at the age of four, her parents have dedicated themselves to Neuroblastoma UK to support research efforts and have benefitted from the emotional and social support provided by a charity called Jak’s Den, founded by the family of a victim of childhood cancer. This is a wrenching, illuminating episode in our Year of the Zebra series offering important insights from a parent’s perspective for providers and policymakers alike. 

Mentioned in this episode: 
Jak’s Den https://www.teamjak.org.uk/
Neuroblastoma UK https://www.neuroblastoma.org.uk/

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