As some of you may know, in December 2023, the SLO Foundation put out a call on social media for those who would be interested in participating in Beyond the Diagnosis. Beyond the Diagnosis, we learned, has the faces of kids with rare diseases painted, and those portraits travel around the world to educate and bring awareness to the stories and lives of those kids and their families. We happily put forth Lexi’s name, as we truly felt that this project resonated with us as Lexi’s facial features were an important factor in us obtaining her diagnosis.

The SLO Foundation randomly chose Lexi and we submitted the requisite information, narrative, and pictures. Through the partnership that the SLO Foundation has with Mirum Pharmaceuticals, we were introduced to the company sponsoring the artist working on Lexi’s picture – EVERSANA.

EVERSANA contacted us with an offer to participate in their National Meeting, where the portrait of Lexi would be added to the Beyond the Diagnosis exhibit. This incredible opportunity to speak at EVERSANA’s National Meeting and attend the unveiling also came with the icing on the cake of five days at a beautiful resort in Scottsdale, Arizona. We decided as a family that this was something we couldn’t pass up on!

The trip in itself was wonderful; we were generously hosted at the resort, and Lexi and her sister Kaliya enjoyed the pool, cactus garden, Camelback Mountain and all of the gorgeous scenery. It was a welcome change from the snow at home in Ottawa, Canada! During our stay, we had the pleasure of meeting so many passionate people from Mirum and EVERSANA, and the founder and CEO of Beyond the Diagnosis, Patty. Everyone was incredibly kind to us, interested in Lexi and her story, and what our experiences have been like thus far.

Near the end of our stay and the final day of EVERSANA’s National Meeting was where the unveiling was to take place. With the thoughtful preparations EVERSANA had put in place for Lexi, we made our way to the stage so that we could talk a bit about our journey and see the painting for the first time. Jenna, Julie, Barb, and Maria From EVERSANA’s had arranged to have Moana music playing to make Lexi feel comfortable, had asked the audience to wave and smile instead of clapping to minimize the amount of sensory input, and provided us with such a warm welcome! Seeing friendly faces up on the stage, like Patty, and Tina and Renee from Mirum, put us more at ease.

We said a bit about Lexis care journey in hopes of connecting with the staff at EVERSANA, linking what they do with patients like us they provide services for.

And then the unveiling. The cover came off of the portrait and Lexi was ecstatic to see her image up on stage! Lexi was jumping and clapping and told us how much she loved it! To be able to see the sheer happiness that someone (other than her family) had celebrated HER was so moving.

Jota Leal was the artist that created the portrait of Lexi, and we are forever indebted to him for painting her so beautifully!

To be able to share Lexi’s story, celebrate her as she deserves, and meet a wonderful group of professionals is something we are eternally grateful for. It was an experience of a lifetime and we will cherish these memories for forever.

Sincerely,

Alicia
Lexi’s mother