Lexi's Legacy

My Sister, Lexi

My sister, Lexi lost her life to a rare disease called Blau syndrome just before her 7th birthday. Despite her pain, Lexi chose every day to live her best life and through her courage, compassion and her charismatic personality she inspired others to do the same. Lexi's love was contagious - it was impossible not to feel like the most amazing person when you were with her. It comforts me to know that Lexi continues to make a positive impact on the world, inspiring the people she loved as well as those she never got the chance to meet. Do you wish for a world with less suffering? A world with more kindness, compassion and generosity? So did Lexi. As you join us in our quest to carry on Lexi’s legacy, this quest for a better world becomes your legacy too.

-Felix age 11

The Most Valuable Inheritance

Through her legacy, Lexi inspires us to take action to make a positive impact on the world. And even through the hardest times she reminds us that "the sun will come out tomorrow". At six-years-old Lexi didn’t leave behind a material inheritance but what she left us was far more valuable – an abundance of love and inspiration... so much in fact, that we are happy to spread it around.

That is Lexi's legacy.

The Best Gift

This is Lexi. A vibrant, vivacious, funny and fun-loving kid with huge blue eyes, wild curls, a deep belly laugh and a huge heart. Lexi never cared much about getting material things. Just as she says in this video to Santa- she is happy to take a break from presents. She loved people, she loved animals and she loved helping others. Lexi was very inspired by reading the Goodnight Stories for Rebel Girls book and she was already a passionate advocate. Today Lexi continues to change the world by inspiring us all to take action and

to make the world a better place.

Projects inspired by lexi

A Million Acts of Love

Felix is on a mission to inspire A Million Acts of Love by December 16, 2024, honouring what would have been his sister Lexi’s 12th birthday. Drawing from Lexi’s legacy of love, her unwavering compassion, and her favourite song, 'A Million Dreams,' Felix is working to transform those dreams into A Million Acts of Love.

1. Sign up now

2. Spread kindness

3. Share your act of kindness with us (optional)

#amillionactsoflove

@amillionactsoflove

or email spreadinglexilove@gmail.com

We're not just dreaming of a better world—we're in the process of creating it, one act of love at a time.

Spreading Lexi Love

Felix Townsin's 'Spread Some Lexi Love' campaign, grew into an unprecedented movement of compassion and kindness. What started with a modest aim of inspiring 100 acts of kindness swiftly captivated hearts around the world, smashing expectations by achieving over 4,000 acts of kindness. This wave of goodwill garnered attention from local news outlets and radio stations, eventually making its way onto the national stage. Through his campaign, Felix has turned his personal tragedy into a powerful legacy of love, rallying people, businesses, schools and beyond to partake in acts of kindness in honour of Lexi. Watch the story now.

When Felix was 5, he wrote Don’t Floss Your Toes, as a fundraiser for Blau syndrome (early onset sarcoidosis) and juvenile arthritis. At that time there was no foundation for Blau syndrome. So far the book has raised more than $30,000 for Blau research.

The books are available online for $12.95 CDN.

Or donate $20 CDN to Cure BS and send us an email requesting a copy.

People will still like you if your socks don't match.

Don't lick your fingers - unless they are covered in chocolate.

Water your plants - they look better that way.

Give your grandparents lots of hugs

Lexi's Wish

Felix started the Lexi's Wish Campaign to raise awareness for Blau syndrome. His short film showed us the power of social media by connecting us with several new Blau families (there are only 200 reported in the world) and scientists around the world (two are now actively pursuing research for Blau syndrome). It is never too late to share this video and continue helping us raise awareness, and help connect us with others affected by Blau syndrome.

Once Upon a Gene - Stories of Courage

Felix was honoured to speak on Once Upon a Gene He shares about his sister, how she lived and how she died, and how she inspires him to be courageous. Every. Single. Day. He teaches us all to be courageous in our grief - not to hide from it, not to ignore it, but also not to let it weigh us down or stop us from finding moments of joy.

RARE HUMANS: Turning Hope into Action

In Lexi's honour, Cheryl-Lynn (Lexi's mom) created the film RARE HUMANS: Turning Hope into Action. The film shares Lexi's rare disease journey alongside 7 other incredibly inspiring rare disease families. This film highlights how close we are to cures for so many genetic diseases. We hope Lexi's story inspires others to turn hope into action. Please take 5 minutes watch the trailer. The full hour long documentary with Lexi's story can be viewed on youtube.

Lexi's Legacy Wins National Broadcasting Award

CTV News Vancouver Island's Adam Sawatsky won a national broadcasting award from one of Canada's most prestigious journalism organizations for his story, Lexi's Legacy. The story ended-up being shared around the world, shining a spotlight on an ultra-rare disease with little-to-no funding or research. Earlier this year, Sawatsky's short feature won the regional RTDNA award before competing and winning at the national level.

The Cure Blau Syndrome Foundation

One of Lexi’s wishes was to find a cure for Blau syndrome. We started the Cure Blau Syndrome Foundation with Lexi as our inspiration and original founder and we continue our efforts for those who are still fighting their battle. We are so grateful for all of our supporters and their donations and efforts to advance research for Blau syndrome. Thanks to this support, the Blau community has new sense of hope - as people worldwide raise funds and awareness so that they can have a brighter future.