Research Center for Inclusion

Formerly known as NLR Mekong

Writing about my daughter, Minh Chau

I still remember the day you were born. I was panicked when I looked at you. There was something wrong. Your forehead was abnormally high. The pediatrician diagnosed that you had Down syndrome, but your chromosome test at the Department of Genetics at the Hospital of Hue University of Medicine and Pharmacy showed XX result. I was worried day and night seeing you develop differently compared to other children at your age. You had trouble sleeping, often vomited, did not roll over or crawl. I took you to the doctors but there was still no concrete result. Mom’s instinct told me that you were sick and I needed to find a way to help you.

When you were about one year old, we went to see a doctor at Viet Duc Hospital in Hanoi. You were diagnosed with Craniosynostosis (the doctor explains that the early closed skull had affected your brain). The skull had to be opened and reshaped so that the brain could grow and you would have a more balanced face. You have endured two long surgeries and suffered a lot of pain. By the age of two, your health was stable. At that time, you hadn’t walked but just dragged your lower body when you wanted to move and babbled a few words ‘daddy’, ‘mommy’. I took you to the Office of Genetic Counseling and Disabled Children in Hue. You were examined, tested and diagnosed by teachers at the center. The results were that you were slow of language development, cognition and movement. After that you began to receive support from the teachers here.

Our house is 40km away from the center. I was teaching at a local school. With the help of our family and my colleagues, I arranged 2 to 3 days per week to take you to the center so you can learn to speak and receive physical therapy. You and I attended every session regardless of whether it is sunny or rainy. Sometimes I got frustrated and wanted to give up, but looking at your smile, with the love for you and the hope that you could grow and understand better, I have the courage to overcome all difficulties.

At the center, you was taught and assisted by the teachers. With the love for children and great patience, the teachers trained you day by day using many methods for a child who got bored quickly and did not want to learn. The teacher showed me how to teach and play with you at home. Together we have accompanied you in the improvement path.

After more than two years of training, from a girl who only knew how to drag the lower body, now you can walk, run and jump more flexibly. When you first received interventions, you only spoke a few words. Now you can speak sentences with 5 to 6 single words. You can sing, tell stories and introduce yourself and your family even though you are not yet fluent. You go to kindergarten and get along well with friends. You are happy and enjoy participating in school activities. Compared with friends at the same age you are still slow, but your father and I are really proud and happy.

We would like to send our great thanks to the teachers at the center, who have been able to help our child. It is a long way ahead with great challenges; and I hope the teachers will continue to support my child.