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Boy's unsteady walk reveals rare brain cancer

Summary

  • A four-year-old boy's unsteady walking led to a brain cancer diagnosis.
  • His mother was diagnosed with breast cancer while he underwent treatment.
  • Family seeks US trial for preventative treatment not available in UK.
Boy's unsteady walk reveals rare brain cancer

A four-year-old boy named Raffi Starkowitz experienced an alarming change in his coordination, leading to an emergency hospital visit. Doctors discovered a mass on his brain, subsequently diagnosed as aggressive anaplastic medulloblastoma. Raffi underwent extensive surgery, chemotherapy, and radiotherapy. His family faced further hardship when his mother, Nicky, was diagnosed with stage three breast cancer during his treatment, requiring her own rigorous medical regimen.

Despite Raffi's scans showing no current disease, the risk of recurrence is high, with no preventative treatments available in the UK. This uncertainty prompted the family to seek experimental therapy abroad. Simultaneously, Nicky is undergoing chemotherapy for her breast cancer, adding immense emotional and logistical challenges for the family.

To access a clinical trial for a potential preventative drug, difluoromethylornithine (DFMO), Raffi has been accepted at a hospital in Pennsylvania, USA. The family is actively fundraising to cover the substantial costs associated with treatment, travel, and accommodation for this life-saving opportunity.

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Raffi Starkowitz was diagnosed with group 3 large cell anaplastic medulloblastoma.
There are no preventative treatments available in the UK for his high-risk condition, so he is joining a US trial.
His parents are navigating Raffi's brain cancer and Nicky's breast cancer diagnosis simultaneously, seeking support and treatment options.

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