On October 19th, six-year-old Lexi Townsin passed away after living with Blau syndrome her whole life.
This rare disease, also known as early-onset sarcoidosis, is a painful, life-threatening condition that combines arthritis, sarcoidosis, and uveitis.
The handful of people in the world who live with Blau syndrome experience stunted height, osteoporosis, uveitis which could cause them to lose their vision, and a weakened immune system that reacts to viruses in unpredictable ways.
Lexi’s condition and her death has been a major blow to her loving family who earlier this year, pitched a documentary, ‘Me, my Dad and Blau’, to help raise awareness for the disease.
However on October 19th 2019, Lexi died suddenly as a result of the illness. Her 9-year-old brother Felix and her parents launched a campaign called #lexiswish in an effort to find a cure for Blau syndrome.
Through this campaign, the Townsin family is continuing Lexi’s wish of finding a cure by planning to host the world’s first Blau Research Symposium in Victoria in June 2020.
The Townsins are attempting to find other Blau syndrome patients, doctors, and researchers, and bring them together at this event.
Here’s a video made by the family:
“The video was released this afternoon with Felix’s goal to have 1000 shares. He is already a quarter of the way to his goal and he has already received a comment from someone with Blau – we think he is from Brazil,” father Troy Townsin tells Victoria Buzz in an email.
Lexi Townsin would have turned 7-years-old on December 16th.
Now, her family is trying to make her last birthday wish come true by raising awareness for this painful and deadly illness.
Share the original video with the included caption to help them spread their message.