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. When she died I thought my world was over, but with a lot of support I am learning to find joy amongst the pain. One of the things that has helped me most is knowing that Lexi continues to make a positive impact on the world. I love hearing Lexi's name and knowing that people remember her. This is why I started this website because I want my sister's spirit to live on, 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
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.
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.
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 $2400. His goal is to raise $10,000 before his 12th birthday on January 20, 2022. These funds will be allocated towards establishing criteria to prevent future deaths from MAS/HLH - a severe reaction of the immune system, which was misdiagnosed with Lexi.
The books are available online for $12.95 CDN.
People will still like you if your socks don't match.
Don't lick your fingers - unless they are covered in chocolate.
Dads shouldn't say shhhh so loud.
Water your plants - they look better that way.
Give your grandparents lots of hugs
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.
Felix was asked share a story of courage for the amazing Effie Parks at Once Up a Gene Podcast. He shared a story of 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.
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 view on youtube.
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.
Wondering how you can celebrate Lexi? Felix has made a list. He reminds us to celebrate her life, for the amazing kid she was. Felix says, “Dad, wouldn’t it be amazing if people around the world celebrated Lexi - even without ever meeting her?” So we put it out there to the world, to pick something from Felix’s list and help him celebrate his sister’s life.
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.
Lexi's legends are the amazing people who continue to keep her legacy alive. Click on the images below to hear some inspiring stories. You may have known Lexi, or you may not have had the chance to meet her. As Lexi always said - a stranger is just a friend we haven't yet had the chance to meet. Regardless of your connection to Lexi, we want you to be one of Lexi’s legends – it’s easy - just let us know how you or your crew are contributing to Lexi’s legacy by spreading Lexi’s love in the world.
Wondering what you can do? There are endless ways you can contribute - donate to, or volunteer with a charity/non-profit in Lexi's name (wear Lexi's button while you work if you have one), plant a tree, foster a pet, paint a mural for Lexi, make a fairy garden, secret santa someone who could use some Lexi love, tell someone you love them, if you have a business consider launching a product in Lexi's name and donate partial proceeds - there are so many ways to spread Lexi's love. If you are stuck for ideas - write to us - Felix has lots of suggestions.
Lexi and Felix are proof that some of the most impactful leaders come in the smallest packages. While children have the mindset to make a positive impact, they don't always have the support and resources to make it happen. We want to match young changemakers with the resources they need to make a positive impact.
Our world shattered when Lexi passed. We never imagined finding joy in a life without Lexi's physical presence. To be honest, every day without Lexi is a struggle and we expect it always will be. Sadly, there are so many others who share this devastating reality. One of the things that has helped us survive the darkest moments of our grief has been taking family getaways. We want to offer this experience to other grieving families who may be struggling to survive the unsurvivable. We have welcomed grieving families into our home and we would like to expand this. If you have access to accommodation or an experience that you would be willing to donate to a grieving family, please reach out. We would love to match you with a family (or an individual) in need.
How does Lexi inspire you?
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