Life is filled with enough uncertainty, never mind having a potential time bomb growing in those you care for. Elias - The Phearless Ninja - is a 9-year-old ninja warrior living in Northern California, with his Mum (Australian), Dad, and older brother. He has been training as a ninja for a year and a half, competing in local and regional competitions, and LOVES it! He qualified for the UNAA National Finals 2020 (cancelled due to the pandemic). Now he's trying to use his love for ninja warrior to coach his earthbound Mum and bring attention to a silent terror.
Elias' Australian Grandma died in April 2019 from a brain tumor. She also had an abdominal paraganglioma (para) causing hypertension, which was associated with a genetic mutation (SDHB). This mutation often leads to development of tumors that are more likely to be malignant (and spread throughout the body). Sadly, Elias’ Aunt and three of his cousins also have the SDHB mutation, and every year they have tests to check for tumors associated with this mutation.
Pheochromocytomas and paragangliomas (pheos/paras) are types of neuroendocrine tumors (NET), which are extremely difficult to diagnosis, as they can mimic other common problems. They are often associated with excessive production of adrenaline and noradrenaline, and as such can cause hypertension, sweating, rapid or forceful heartbeat, tremors, and a sensation of panic. Most patients are misdiagnosed with idiopathic hypertension, stress, and anxiety... and are left to suffer for many years. Many physicians are looking for horses (causing those "hoof prints"), when they should be looking for the zebras - hence the zebra being the beloved mascot of those suffering with pheos and paras. The danger in these tumors going undiagnosed for many years is not only the toll of suffering these symptoms for years, but also the heartbreaking stories of patients being terminal by the time they are diagnosed. There is no effective treatment for metastatic pheos and paras. A patient's best chance is to be diagnosed early, with increased potential for successful early surgical removal.
In celebration of what would have been his Grandma's 70th birthday this year, Elias decided he wanted to raise awareness of pheos and paras, to honor her memory. He decided to do this by getting his Mum off the couch, and trained as a ninja warrior...in just over 12 weeks, while documenting the journey. The end goal is for Elias’ Mum to complete a ninja warrior course at a gym by her 49th birthday in the begining of June.
Do you think he can do it? He has his work cut out for him - she hasn't exercised in over a year. It's going to take a lot of hard work, love, encouragement, being phearless (fearless for you non-pheo folks), and a ton of ninja fun! Follow Elias and his Mum’s journey at Phearless Ninja on Facebook and Instagram, join in the fun at home (and your local ninja gym), share with your friends and family, and consider making a donation. Keep an eye out for a link (coming in the next few weeks) to show your zebra flare by buying a tshirt or ninja headband! 100% of donations, and funds from tshirt and ninja headband sales goes to the fantastic work by Pheo Para Alliance, who support pheo/para patients and their families, and fund research.