Help the Wiest Twins Fight Cancer

This Go Fund Me was created to support Shannon Wiest and her three children.

 

In January 2022, our friend Shannon received sad and shocking news. At 20 months of age, her son Felix was diagnosed with neuroblastoma (cancer) and opsoclonus-myoclonus-ataxia syndrome (OMAS), a very rare neurological disorder directly caused by the tumour. Boston Children's Hospital estimates OMAS affects one person for every 5 million worldwide. Felix underwent surgery to remove a malignant tumour and then aggressive treatment in hospital, including IVIG, steroid therapy, multiple rounds of plasma exchanges, rituximab, tocilizumab and chemotherapy. Even after the disorder is successfully treated, the rate of reoccurence is high (50-80%).

 

One baby diagnosed with cancer and OMS would be overwhelming, but unbelievably, Felix's twin brother Beau was diagnosed in 2020 with a rare cancer as well, multi-system Langerhans cell histiocytosis (affecting 1-2 per million at Beau's age of onset, 2 months old) and Rosai-Dorfman Disease (less than 1000 known cases). Beau underwent a year of chemotherapy and other treatments (IVIG, blood transfusions, steroids, infusions to help rebuild damage to his bones, etc.).

The odds are truly unfathomable, including to many physicians across the Children's Hospital of Eastern Ontario (CHEO) and SickKids treating the boys who expressed shock. However, throughout all of this news, Shannon has stayed very strong and positive. She is the sole provider for her family as a dedicated full-time single parent. Felix's diagnosis happened while Shannon was still on leave for Beau's illness, and following her regular mat leave. Our systems are not set up to handle a situation like this, because this amount of trauma so rarely affects one family this disproportionately.

 

We spearheaded this fundraiser to help with funding for nursing care, therapeutic equipment for physical therapy, the extremely high costs of drugs for rare diseases, and allowing Shannon to take necessary but very extended leave from her career. We are also raising this money with the rate of reoccurence in mind, as well as to help the Wiest family with the long term and late term effects of these diseases, of which there can be many.

 

No one can ever plan to deal with a situation like this. Please support Shannon and her three children as they face this road with our unconditional love in the face of adversity. Shannon extends her heartfelt gratitude to each of you for your truly overwhelming kindness and generosity.