Responding to International Day of Rare Diseases, on February 26, Children's Hospital 1 organized the 5th Rare Diseases Day with the theme "Lighting up Dreams". This is an annual activity for families with children with rare diseases being monitored and treated at the hospital.
For many years, Mr. Nguyen Van Thanh (Dong Thap) has accompanied his 7-year-old son in the fight against the rare disease MPS II. He was diagnosed with this disease at the end of 2019. Before that, his family had suffered the pain of losing their first child because of the same disease.
Currently, the 7-year-old boy maintains periodic infusions every 2 weeks. Every time the appointment comes, the two fathers and sons take a bus to Ho Chi Minh City for treatment.
Mr. Thanh especially appreciates the hospital maintaining the Rare Diseases Day organization because for him, the community's understanding and concern for rare diseases will open up more opportunities to support pediatric patients.
On Vietnamese Doctors' Day, February 27, Mr. Thanh sent words of gratitude to the hospital's medical staff for their dedicated care of pediatric patients throughout the challenging treatment journey.
Speaking at the program, Dr. Ngo Ngoc Quang Minh - Director of Children's Hospital 1 - said that the journey of treating rare diseases is often arduous, requiring the joint efforts of families, medical staff and the community.
First of all, it is the perseverance and love of parents and relatives. Besides, there is the continuous effort of the medical team. At the same time, the role of sponsors and philanthropists is also very important, because the cost of treatment for rare diseases is often high.
There are children who were born with very severe prognosis, even at times thinking that it would be difficult to overcome. However, today, they can go to school, study and nurture dreams like normal children" - Dr. Ngo Ngoc Quang Minh shared.
This year's program includes exchange activities, connecting families, expressing gratitude to parents and caregivers, and many fun activities for young children.
