The story of Zein
My name is Zein, 13 years old from Palestine, I live in United Arab Emirates, I go to school Year 9 British Curriculum.
I am defect with a gene name MTPAP in mitochondria, known by one of Autosomal recessive cause a disease name spastic ataxia level 4.
I did a genetic test and two researches.
They couldn’t confirm the disease that caused by the gene MTPAP.
People with spastic ataxia typically have abnormal tensing of the muscles (spasticity), problems with balance and coordination reduced sensation and weakness in the arms and legs add to that recently I had kind of convulsion type focal epilepsy.
I lost my brother he is in heaven now he shared with me same defect gene and same disease.
Me and my mother promote a great awareness of our living experience because of my certain illnesses.
“A Life in a Day” would simulate how it would feel to spend 24 hours or more in the shoes of someone with a serious illness.
I do not use my hands and legs I am on a wheelchair, I couldnt write, feed myself,wear my clothes and difficulties with my speech.
My mother wake up before me and she start her day focus on me.
The start with my neurological medicine and two times daily and unforbidden to forget any dose that lead to have bad seizure.
My mother check her schedule appointments everyday to go for my doctors Neorulogy,phisio therapy and function therapy.
I am doing homeschooling on line since covid19. My mother is my shadow during the classes from 7 to 2, she arranged by her self all school plans following the standards that allow me to educate and that suitable and acceptable with my disability .She watched me carefully what I am able to do and what I am not …what I can tell and the way I can tell.
Because of my weakness muscles so she feeding, dressing, studying, bathing and carry me to bed and toilet.
She help me to study for exams and to do homework .I have speech difficulties, she taught me how to say the letters correctly by education app on IPAD or reading titles from TV and study my subject’s school.
She do for me physiotherapy sessions at home by herself to reduce pain and avoid stretching>
One of main problems now because of mito and weakness muscles is scoliosis so she focus more and work to correct and protect my figure bones from increasing.
My mother dont sleep well because she watch me during sleep no seizures.
I become my mother career in her life she has to remember my cards renewal, doctor’s appointments, medical test requested by doctors, flu annual vaccination, Not allow medicines out of stock, arrange medical reports and school reports, equipment and materials he need like medical shoes, wheelchair, toilet, his teachers, his homework.
Now I have social media platform to make videos and photos about my life. Although I am a child but I own a charisma that help me to inspire the community.
I participated in many competitions, I love to draw and I am able to draw, it is a challenge that i could do and I won with UNICEF Mena the bluedot competition with 4 draws.
I am smart at school and having a good reputation between my teachers and friends.
I continue my life day by day …I forget how I am but I only remember what I deserve.