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Brother of girl who died of rare disease asks people to do good in her honour
With the help of his parents, an 11-year-old Esquimalt boy has launched a website that not only celebrates his sister’s legacy but asks people to do something positive for the world in her honour.
Alexandra (Lexi) Townsin lost her life to a rare disease called Blau syndrome two years ago, just two months shy of her seventh birthday. Blau syndrome is an inflammatory disorder that usually manifests in children before the age of four. It affects fewer than one in a million children. There is currently no cure.
To mark her birthday last month, her brother Felix launched a website.
“I started this website because I want my sister’s spirit to live on, inspiring the people she loved and those she never got the chance to meet,” said Felix.
“Do you wish for a world with less suffering? A world with more kindness, and generosity? So did Lexi.”
Other ways the family is honouring Lexi’s legacy include founding the Cure Blau Syndrome Foundation, running Lexi’s Little Leaders, a program enabling youth with big ideas to get access to the resources they need to make their visions come true, and facilitating Grief Retreat, an opportunity for families to get away and grieve together while enduring heartbreaking loss.
“Life is short, and Lexi’s was much shorter than it should have been, but the love she put into the world doesn’t disappear — it is still growing,” said Troy Townsin, their father.
“Felix had this amazing idea that people who didn’t even know Lexi might be able to celebrate her and make the world a better place at the same time.
“Participating is so easy — just do something good and then let us know about it — you become one of Lexi’s Legends and we can let Felix know how his sister’s legacy is impacting the world.”
• For more information, go to lexislegacy.com