January 21, 2014–November 15, 2019
A Message from Lhassa’s Mom
My girl, my little ragdoll, my tiny limp animal, my enigma, my ally, my deepest wound, my reverse double, gradually I’ve become able to understand that you live in a beautiful world.
A world where opposites meet and coexist. A world where tragedy cohabits with comedy, where joy transcends pain, where life supersedes the threat of death.
I want to thank you for your calm, your innocence, your simplicity and your strength, your beauty unfolding despite the disease, this unprecedented and unequaled beauty which crosses screens and reaches out to other people’s hearts. Your eyes are so dark they reverse hell, your smile would make a glacier melt.
I admire your resilience through all the hardships your little body has to go through, your capacity to be in the here and now without being scared of what’s ahead, without regretting the “normal” childhood which you will never have.
You have become my inspiration. My best teacher ever. A philosopher ignoring her talent. You give me the energy to fight for you and other children like you. You do that without complaining, without shouting at anyone, without crying or mood swinging.
Like a still acrobat.
More fragile than an ephemeral flower you know the secret to produce light in the darkest night.
You are perfect.
Read Lhassa’s full story here.
MAKE A GIFT
We honor Lhassa’s memory by continuing our relentless mission to find a cure for KIF1A Associated Neurological Disorder. Gene therapy and drug development are within reach, but there are two things preventing us from finding that cure: time and money. You can make a gift to support our mission in Lhassa’s honor.