While most children are happy and carefree when they go to school every day, Alya can barely attend classes for more than two hours a week due to the lack of an AEHS (organization that helps students with disabilities). This is just one of the many examples of the difficulties this 4-year-old French girl must face. Toombow Kids will share a glimpse of her daily life with you.
When Alya was born on July 12, 2018, her parents, were joyful, but soon started to worry. Noticing that their daughter had an abnormally large tongue and sometimes stared into space, they sought out numerous doctors who paid little attention to their concerns, blaming it on parental stress and anxiety. And yet, Audray and Willy, Alya’s mom and dad, were right to insist! After a series of appointments, they finally found a specialist who took them to the emergency room to learn more about the abnormalities he had identified. In 2021, and after numerous tests, doctors discovered that Alya has Wiedemann-Steiner syndrome. This diagnosis was obtained due to her parents’ perseverance.
“You must always listen to yourselves as parents. I was told so many times not to worry about my daughter’s symptoms. If I had listened to all the doctors, Alya would no longer be here. Trust your instincts.”
Wiedemann-Steiner syndrome is a progressive disease causing many chronic physical and neuropathic pains. It also causes heart problems and intellectual disability. Alya is also affected by irritable bowel syndrome, is missing a pair of ribs, and has sleep apnea… So difficult to handle for a 4 year old child. Also, she is extremely sensitive to noise and often screams when she hears motorcycles or other loud noises. She can remain immobile for a very long time and has a very poor tolerance for physical contact. Thus, simple everyday tasks can become quite complicated, as Audray, Alya’s mother, points out.
“When we cut her nails, we close the window because she screams so loud. My husband has to help me hold her as she struggles and every time at the end, her hands are all red. Even changing one of her diapers is a real obstacle course.
But as they say, a rainbow comes after the rain! Even if she has tantrums, Alya has a cheerful personality. She is very close to her brother Kayron, who is 9 years old. Although he has Tourette’s syndrome and ADHD, he is very attentive towards his little sister and plays a lot with her, especially the role of the taster when Alya makes a snack! Her parents are in awe of their daughter’s attitude.
“Alya is full of love, she gives it to everyone! With everything she goes through, we honestly don’t know how she does it. Often, we complain about silly things, but when we have children like Alya, we say to ourselves that we shouldn’t sweat the small stuff. It’s a life lesson! Everywhere she goes, she is like sunshine, she gives hugs and kisses.”
At present, Alya is in a lot of pain, she doesn’t eat much, and she has tremors, but she keeps fighting like a warrior. The entire Toombow Kids team sends her a big hug and courage to continue her fight !