Lexi Townsin may have been little, but her heart was huge.

Just before her third birthday, Lexi was diagnosed with Blau syndrome, a rare inflammatory disorder that affects the skin, joints and eyes.

"At the moment we know of only about 200 cases in the world," said Lexi's mother, Cheryl-Lynn.

Despite her pain, Lexi chose every day to live her best life and through her courage, compassion and charismatic personality, Lexi inspired others to do the same. 

"Lexi was a bright, bubbly and charismatic little girl. She had a huge heart and was just loved by everybody who met her, " said Cheryl-Lynn. "She was also extremely brave and resilient."

In October of 2019, just before her seventh birthday, Lexi passed away unexpectedly. 

"Being a disease of the immune system, there was always the risk of issues. So, having a cold or a virus could lead to something life-threatening for Lexi, and that's what happened in the end," Cheryl-Lynn explained. 

Growing up, Lexi had an amazing relationship with her brother, Felix. After discovering his sister was dealing with Blau syndrome, Felix felt he needed to do something.

"When I was five, I made a book called, Don't Floss Your Toes. The book is an advice book. I wrote it because everybody told me that I had a unique point of view, and I wanted to express that. I also used it to raise funds for my sister," said Felix.

Now, just a few days out from his twelfth birthday, Felix is once again hoping to raise more funds for Blau syndrome. 

"When Lexi died, I realized that it wasn't just that I had to find a cure for Blau syndrome, but if people kept on dying from it [Blau syndrome], they couldn't be cured because they weren't there," Felix explains.

Felix hopes to raise $10,000 before his twelfth birthday on January 20, 2022. The funds will go towards establishing criteria to prevent future deaths from MAS/HLH, a severe reaction of the immune system, which was misdiagnosed with Lexi.

"When she died I thought my world was over, but with a lot of support, I am learning to find joy amongst the pain," said Felix. "One of the things that has helped me most is knowing that Lexi continues to make a positive impact on the world."

Cheryl Lynn says it has been amazing to watch Felix not only survive this loss but to thrive and to make such good in the world out of his pain.

 "It's definitely been lifesaving for us to have such a bright light in Felix," said Cheryl-Lynn.

Today on Connections, Felix and his mother, Cheryl-Lynn, share a bit about Lexi's life, about Blau Syndrome and how you can help find a cure.