My daughter Meryem was born in Trabzon, Turkey in 2018. Meryem is 4 and is our first child. She has a little brother who is 2. She was diagnosed with SYNGAP1 a year ago. Meryem's mood is changeable, she is generally happy, she likes to take a bath and ride a bike with our help. When she was 6 months old, we found out that she had a developmental disorder and we went to the pediatrician. He said there was nothing abnormal, but our suspicions did not end because Meryem does not sleep, is constantly constipated and has no appetite. We went to the pediatric psychiatrist and he told us that Meryem might be a special child. We first applied to the pediatric neurology department, then the genetics department, and eventually she was diagnosed with SYNGAP1. Meryem is receiving special education. Due to her gastrointestinal problems, she cannot make adequate progress in her education. She is followed and researched by gastroenterology and metabolism doctors, and still no cause has been found. Meryem follows a gluten-free and casein-free diet. She has a bloated stomach. We strive to overcome this problem with new drugs and treatment methods and help her continue her education.
We can use your help to raise awareness about SynGAP1.