It’s all for Bahadır

Buket Aslan, who lives in Izmir, devoted her life to her son Bahadır, who was diagnosed with the rare genetic-based ‘Coffin-Lowry’ syndrome, and at the age of 36, she decided to go back to university to study physiotherapy in order to be more beneficial to her child. Despite being originally a teacher, Buket Aslan is now attending the Department of Physiotherapy and Rehabilitation at Izmir Economy University (IEU), proving once again that a mother's love can overcome any difficulty for her 5-year-old son Bahadır, who has developmental delays, seizures at 37 degrees, and difficulty speaking due to the syndrome.

Bahadır, the first child of the couple Buket-Recep Aslan, was born on May 4, 2019, in Izmir. The Aslan couple, experiencing the joy and excitement of having Bahadır, noticed some difficulties in Bahadır during the first months of infancy. Observing that Bahadır could not hold his head up and had differences in muscle movements, the Aslan couple immediately headed to the hospital. Unfortunately, the couple's concern about a possible illness in Bahadır turned out to be true. After extensive genetic tests and neurological examinations, Bahadır was diagnosed with ‘Coffin-Lowry syndrome’, a genetic syndrome classified as a rare disease due to protein deficiency when he was only 20 months old.

THEY ALSO HAD A DAUGHTER

The Aslan couple, deeply attached to Bahadır, embarked on a completely different life for the best growth of their son. During this time, the Aslan couple had another healthy daughter. While father Recep Aslan continued his public service job, Buket Aslan, despite being originally a Science teacher, started dedicating her entire day to her two children. In this process, the Aslan couple moved their house from Karşıyaka to Menderes, thinking it would be better for Bahadır and that he would socialize more comfortably.

THOUGHT ABOUT EVERY DETAIL

Fighting hard to ensure that Bahadır does not lag physically, Aslan paid meticulous attention to every detail, from his child's nutrition to the games he played. Deciding to take comprehensive physiotherapy training to care for her child in a healthier and more beneficial way, Aslan started her education at the Faculty of Health Sciences, Department of Physiotherapy and Rehabilitation at IUE.

IT EFFECTS EACH CHILD DIFFERENTLY

Saying, “Our children are everything to us”, mother Buket Aslan stated, “Coffin-Lowry is a syndrome rarely seen worldwide, and it affects each child differently. We suspected a problem in Bahadır when he couldn't hold his head up during infancy. Very detailed examinations and tests were conducted. We constantly went to the hospital during this process. After a long examination, Bahadır was diagnosed with ‘Coffin-Lowry’ syndrome. Due to the effects of this syndrome, Bahadır has difficulty speaking and experiences seizures at 37 degrees during certain periods. We have to be very careful to ensure that Bahadır does not lag physically. For example, I don't feed my son ready-made foods, and I hardly let him watch screens. I make sure he is active and social. I pay attention to him eating homemade food, having regular nutrition, and sleep. Bahadır is generally a peaceful, cheerful, and adaptable child. We easily get along in these matters.”

I DIDN'T TREAT HIM LIKE A PATIENT

Stating that she never treated Bahadır as a sick child, Aslan continued, “Our daughter and son get along very well at home; they play various games. Our daughter is 3.5 years old, but she is somewhat aware of her brother's condition. They have very good communication between them. The love and attention we show to Bahadır have positively affected his social development. Bahadır is everything to me. I love him very much. I thought that receiving detailed physiotherapy and rehabilitation training would be very beneficial for Bahadır. I am currently continuing my education in the second year at Izmir University of Economics. Bahadır only receives special education and physiotherapy. My parents take care of my children while I am at school. We try the information, exercises, and applications I learned at University at home with Bahadır. It is not difficult for me at all because I love my children.”

JOINED A FOREIGN ASSOCIATION

Mentioning that there is an association related to Coffin-Lowry in the United States (USA) and that she became a member there, Aslan said, “Through the association, I communicate with individuals and families with Coffin-Lowry syndrome abroad. We ask each other questions and share our experiences through email and social media. There are 60-65 year old people who have this syndrome. There are those playing baseball and engaging in different sports at the age of 22-23 abroad. My biggest goal is to ensure that Bahadır continues his life as a happy individual standing on his own feet. We can achieve this with love, dedication, and attention. Unfortunately, the disease is not well known in our country. I have reached 5 people who have been diagnosed with this disease in our country. We have created a WhatsApp group, and we continue to meet each other through this group.”