Ms Giang and the Vietnam DMD Club
The Vietnam Duchenne Muscular Dystrophy (DMD) Club was established on 10 May 2011 by CLAN (Caring and Living as Neighbours) and the National Hospital of Paediatrics. I found myself filled with joy upon the club’s initiation. Since then, families of children living with DMD have not been alone in their battles. We now have a community where we can connect, share, help and encourage one another.
Nguyen Xuan Doan was elected as the President of the Vietnam DMD Club. Xuan Doan was living with Muscular Dystrophy. Coincidentally, Xuan Doan and I lived close to one another in the Tu Liem District of Ha Noi. I was always impressed by his will and dedication in supporting families. His warm and big smiles accompanied his grand optimism. Xuan Doan was passionate about expanding the works of Vietnam’s DMD Club.
With the assistance of the club’s Vice President, Thanh Van, and support from families and club members, Xuan Doan was able to link to many families allowing him to organise several meaningful meetings and trainings dedicated to enhancing the knowledge and skills of families. Families and club members constantly acknowledged Xuan Doan’s contributions, allowing the DMD Club to grow in popularity.
Unfortunately, he could not overcome the condition. Nguyen Xuan Doan passed away in September 2014. With his loss came a great shock as we said goodbye to a great friend and an incredible leader. We were faced with the question: How could the DMD Club work without Xuan Doan? We questioned whether or not the activities of the DMD Club could be sustained without Xuan Doan.
As an active club member and the leader of the Ha Noi DMD Club, I had a dream of the DMD Club expanding and adding to their achievements. I knew the road ahead of me was not easy, but it was a road I was willing to travel. We have been living in a resource poor setting. As a mother of a son living with DMD, I understand the complexity and overwhelming difficulties associated with caring for a child living with DMD.
The first home visit I led was at the beginning of 2016. I was accompanied by Xuan Doan’s father and older sister. We gave copies of the autobiography Never Give Up, written by Nguyen Bich Lan, to young men living with DMD. Bich Lan was known as a strong-willed woman who lived with muscular dystrophy. In her autobiography she shared her efforts to achieve her dreams of becoming a professional translator, a dream that was challenged when she was forced to leave school at the grade 8 level due to her health condition. Bich Lan supported DMD and graciously donated 10 copies of her autobiography. Recipients were thrilled upon the book’s delivery and I believe what is written in the book will prove to be a big inspiration to them all.
Whenever I have the opportunity to see children/ young adults with muscular dystrophy, I feel a sense of happiness and fulfillment as it makes my life more meaningful. My hope is for these children to forget about their health condition and focus on optimism and confidence.
My second home visit was in June 2017. I was accompanied by Dr Mac Yen Thanh, Xuan Doan’s father and two other club members. Together we travelled under strong heat to a neighbouring province of Ha Noi called Bac Giang. Everyone remained in high spirits filled with enthusiasm. We brought with us a wave of encouragement along with small gifts including books. We were incredibly welcomed and left with a great sense of hope: hope in the helpfulness of the upcoming club activities we had planned.
On September 30 2017, my family and I were invited by the United Nation to an event for children living with disabilities. I also helped other families with children living with DMD register for the event. At the event, the children had an opportunity to make friends and connect with individuals experiencing the same difficulties they face on a daily basis.
After my trips and meetings I have found myself in seasons of happiness and sadness. I was happy at the opportunity to encourage and inspire families, but I was also filled with the sadness accompanied by the helplessness associated with the inability to provide better health care, wheelchairs, computers, books and access to schools. It is difficult seeing children living an isolated life.
I have found that the most difficult part of this experience is the hopelessness associated when thinking of the outcome for most of these children. With their health on a exponential decline day by day there isn’t much physiotherapy can do. I understand the importance of living in the present and helping my child have the best quality of life now, but I can’t help to think of the numerous families that are not able to do the same for their children.
There has been a new spark of hope for development of the DMD Club in the shape of a person. That person is Ngoc Pham James. Pham James is the sister of a young man living with muscular dystrophy. She currently resides in the United States assisting with the translation of materials for the DMD Club fan page.
I am confident that my small contribution to the DMD Club will be useful in developing the community we need.
Nguyen Xuan Doan was elected as the President of the Vietnam DMD Club. Xuan Doan was living with Muscular Dystrophy. Coincidentally, Xuan Doan and I lived close to one another in the Tu Liem District of Ha Noi. I was always impressed by his will and dedication in supporting families. His warm and big smiles accompanied his grand optimism. Xuan Doan was passionate about expanding the works of Vietnam’s DMD Club.
With the assistance of the club’s Vice President, Thanh Van, and support from families and club members, Xuan Doan was able to link to many families allowing him to organise several meaningful meetings and trainings dedicated to enhancing the knowledge and skills of families. Families and club members constantly acknowledged Xuan Doan’s contributions, allowing the DMD Club to grow in popularity.
Unfortunately, he could not overcome the condition. Nguyen Xuan Doan passed away in September 2014. With his loss came a great shock as we said goodbye to a great friend and an incredible leader. We were faced with the question: How could the DMD Club work without Xuan Doan? We questioned whether or not the activities of the DMD Club could be sustained without Xuan Doan.
As an active club member and the leader of the Ha Noi DMD Club, I had a dream of the DMD Club expanding and adding to their achievements. I knew the road ahead of me was not easy, but it was a road I was willing to travel. We have been living in a resource poor setting. As a mother of a son living with DMD, I understand the complexity and overwhelming difficulties associated with caring for a child living with DMD.
The first home visit I led was at the beginning of 2016. I was accompanied by Xuan Doan’s father and older sister. We gave copies of the autobiography Never Give Up, written by Nguyen Bich Lan, to young men living with DMD. Bich Lan was known as a strong-willed woman who lived with muscular dystrophy. In her autobiography she shared her efforts to achieve her dreams of becoming a professional translator, a dream that was challenged when she was forced to leave school at the grade 8 level due to her health condition. Bich Lan supported DMD and graciously donated 10 copies of her autobiography. Recipients were thrilled upon the book’s delivery and I believe what is written in the book will prove to be a big inspiration to them all.
Whenever I have the opportunity to see children/ young adults with muscular dystrophy, I feel a sense of happiness and fulfillment as it makes my life more meaningful. My hope is for these children to forget about their health condition and focus on optimism and confidence.
My second home visit was in June 2017. I was accompanied by Dr Mac Yen Thanh, Xuan Doan’s father and two other club members. Together we travelled under strong heat to a neighbouring province of Ha Noi called Bac Giang. Everyone remained in high spirits filled with enthusiasm. We brought with us a wave of encouragement along with small gifts including books. We were incredibly welcomed and left with a great sense of hope: hope in the helpfulness of the upcoming club activities we had planned.
On September 30 2017, my family and I were invited by the United Nation to an event for children living with disabilities. I also helped other families with children living with DMD register for the event. At the event, the children had an opportunity to make friends and connect with individuals experiencing the same difficulties they face on a daily basis.
After my trips and meetings I have found myself in seasons of happiness and sadness. I was happy at the opportunity to encourage and inspire families, but I was also filled with the sadness accompanied by the helplessness associated with the inability to provide better health care, wheelchairs, computers, books and access to schools. It is difficult seeing children living an isolated life.
I have found that the most difficult part of this experience is the hopelessness associated when thinking of the outcome for most of these children. With their health on a exponential decline day by day there isn’t much physiotherapy can do. I understand the importance of living in the present and helping my child have the best quality of life now, but I can’t help to think of the numerous families that are not able to do the same for their children.
There has been a new spark of hope for development of the DMD Club in the shape of a person. That person is Ngoc Pham James. Pham James is the sister of a young man living with muscular dystrophy. She currently resides in the United States assisting with the translation of materials for the DMD Club fan page.
I am confident that my small contribution to the DMD Club will be useful in developing the community we need.
