Written in September 2019, Anouk shares her powerful journey from devastation to resilience after her daughter, Lhassa, was diagnosed with KIF1A Associated Neurological Disorder. “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.”
Lhassa is a sublime little girl who loves to be cuddled, swung, massaged, tickled, shoulder flopped, hugged. She won’t walk, doesn’t talk. Has no cognitive or motor development. That doesn’t stop her from communicating her joy by uttering high-pitch adorable sounds that propel me in a country of pure and sheer happiness every single time. Despite her severe limits she seems to love and enjoy life. Much more than many valid people I know anyway.
She was born without any complications on January 21st of 2014 at 6 PM. She was healthy, beautiful, perfect and this was the happiest day of my life.
I lived in a complete bliss for several months.
Then she was 5 and something months and all of a sudden I realized she had not reached any developmental milestones. No visual contact. No head control. No interest in her environment. Medical investigations began. In terms of diagnosis no one had a clue. I knew from then on though – July 2014 – that something was very wrong with my daughter’s brain. Meaning she would be severely disabled.
When I looked at Lhassa back then I saw some deficient creature. I saw a child who was unable to hold a toy, to react to her name, to recognize her parents, and who had what seemed to be the intelligence of some unrooted eggplant. (This makes me laugh now. But it didn’t then.)
That is when my world fell apart. The pain was so acute at one point that I imagined taking her life with mine. I knew I could never do such a thing but for a glimpse of a moment I was quite sure this would be the only thing which would stop the suffering. The bright summer light was entering the bedroom – Lhassa laying beside me slowly moving her head from right to left with a blank stare like if she were trying to say “no”– contrasting with the feeling of absolute despair and isolation. Bright summer days would never feel the same.
Then I asked her to forgive me. Sensing this child somehow was eager to live. And maybe she had something to teach me. I promised her I would do everything I could for her to have a wonderful life. And I would stand by her no matter how hard it would be, how bad it would get.
We would eventually get the KIF1A diagnosis three years later – on May 12th of 2017. By then I had learned to deal with the fact that Lhassa was multihandicaped. Then I heard the word “degenerative”. My world fell apart a second time.
… … …
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.
Lhassa passed on November 15th, 2019, at 1:25 PM. In her father’s arms. Surrounded by love. With her mom speaking softly in her ear. Telling her it’s OK to leave now, wishing her a peaceful departure. Telling her that she will be with us forever. Will never be forgotten. Will continue to enlighten our lives. I promised to continue to share her beauty into the world everywhere I go. And I will.
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.