Alya's Fight

"Children with disabilities are like butterflies with broken wings. They are as beautiful as other children but they need a little help to spread their wings."

Alya's family and friends mobilize every day to help her spread her wings and it's partly possible thanks to you. Yes you, visitors of this site who by your presence here contributes to the advancement of our cause. On our site, you will discover Alya's story but also her adventures and the evolution of her fight against illness. The entire Alya fight team thanks you for your support.

Alya's story

My life began with death... This is my story. My name is Alya, I was born at 36 weeks following a placental abruption with internal bleeding.

Arriving at the hospital, my mother felt that something was wrong. She was taken into care and underwent an emergency cesarean section.

I arrived lifeless, the doctors took 20 minutes to resuscitate me, they intubated me and put me in hypothermia for my first 72 hours of life.

After that, I was transferred to a hospital located 1 hour from home. 4 days after my birth, an MRI was done on me and the result was really not good: I had cerebellar anoxia (my brain was not erect for a long time), the gray nucleus my brain is very damaged, I am epileptic and drug-resistant, I am also affected by WEST syndrome.

Following this, the doctors told my parents that I would be severely disabled for the rest of my life, that I would never eat alone, that I would never walk, that I would never stare….

Today I am 3 years old, and I am not evolving like other children, I fight every day with the help of my family. My schedule is busy, with several appointments with different therapists (physiotherapist, occupational therapist, chiropractor, psychomotor therapist, etc.), some of them are not covered by our social security and/or our mutual insurance and all that is very costly for my family.

My family decided to create this association in 2019, to share my daily struggle and raise funds to finance care, medical devices, as well as alternative therapies not covered in France.

The association also aims to support other families who find themselves affected by disability and the difficulties that result from it.

Several volunteers have joined us in our associative adventure and are present during charity events.