The dream of the unlucky boy
On an extremely hot summer day at the beginning of July, 2010, Mr. and Mrs. Ngo Van Sam, the grandparents of a small boy – Luong Quoc Sieu – packed their bags with clothes and a few necessities and traveled over a thousand kilometers to Hanoi. They went in search of a successful treatment for their young disabled grandson; they dreamed that he could walk freely, play football, and go swimming as easily as his friends do.
On an extremely hot summer day at the beginning of July, 2010, Mr. and Mrs. Ngo Van Sam, the grandparents of a small boy – Luong Quoc Sieu – packed their bags with clothes and a few necessities and traveled over a thousand kilometers to Hanoi. They went in search of a successful treatment for their young disabled grandson; they dreamed that he could walk freely, play football, and go swimming as easily as his friends do.
Lương Quốc Siêu was born in 2002 in Tuy Phong, Binh Thuan, in a small fishing village, next to the sea. Sieu lived with his mother, his grandparents and the big family of 15 people – his father passed away at an early age. The family earns a living as traditional fisherman. Sieu is a very smart boy. He was born naturally as other normal boys, but early on, the family began to notice that he was not developing normally. Until he was 11 months old, his family was astonished to see that he couldn’t walk, his arms, legs , and neck weak. He was in constant need of support.
Hoping for the best future for Sieu, his family brought him to many hospitals: from Binh Thuan hospital to the Children’s Hospital I, Ho Chi Minh City and finally Cho Ray Hospital, none was able to treat his disease successfully.
Sieu sat in his wheelchair everyday, and always needed some one to take care of him. Despite his physical limitations, he did not have limitations to his mind; he still loved learning. He was not able to physically attend school, but his aunt taught him how to read and write at home. Ms. Thoa, his aunt shared “Sieu really loves learning. I teach him every day. He learns fast, too. His arms and legs are so weak but he’s very quick and smart. I just feel sorry for him because he really wants to go to school but he can’t…”
Sieu’s future changed when Ms. Thoa happened to read an online article about Donxa – a Belgian NGO in Hanoi which helps many poor disabled children access free healthcare. She immediately contacted to Donxa and asked for help.
Although this case did not belong to the project of Donxa for disabled children who have problems with bones, Donxa still agreed to help Sieu’s family and brought him to Hanoi for much needed medical treatment.
Sieu on the back of his grandfather
Mr. Roby Bauwearets, the chairman of Donxa, took Sieu and his family to many hospitals which specialize in rehabilitation and orthopedic surgery in Hanoi so that medical professionals could assess the cause of Sieu’s disability. Despite 40 degree temperatures, Roby took Sieu and his family throughout the city, from rehabilitation and orthopedic surgery hospitals to geriatric hospitals, and finally, with the help and introduction of some doctors, Sieu was taken to doctor Trinh Quang Dung, the head of Rehabilitation Department at the National Children’s Hospial. The doctor was enthusiastic to examine Sieu and advise on his treatment. Following a number of tests, Sieu was diagnosed with spinal muscular atrophy – a very difficult case, with minimal treatment options. Tired and upset, Sieu’s grandparents wanted to bring him back to Binh Thuan and accept his disability for the rest of his life. However, with the encouragement of Donxa’s chairman and doctors, Sieu’s grandparents decided to stay in Hanoi for 3 weeks so that he may undergo rehabilitation. Sieu’s grandfather was moved to tears “We don’t know how to say to express my thanks to the chairman and doctors who are so enthusiastic to help us. I just hope our boy can stand and walk-that I’m happy already”.
Chairman Roby Bauwearets takes Sieu to the hospital
According to doctor Dung, undergoing rehabilitation exercises for three weeks is very useful for Sieu. It will build his muscle memory and will improve his ability to be more independent. However, it requires patience and a long term commitment to practice. Sieu’s whole family will have to participate in his rehabilitation.
Sieu with doctor Dung
All costs for transportation, accommodation, examinations, treatment, and medicine for Sieu has been supported by Donxa. They were living near the hospital to make it convenient to take Sieu to the hospital everyday. The wheelchair lent by Donxa also helped them greatly; previously, Sieu’s grandfather had to carry him on his back all the time, a difficult task as Sieu was quite heavy due to his mobility challenges.
Practice rehabilitation exercises
Day after day, it was difficult to see Sieu’s grandfather struggle to take his grandson to the hospital. Unfortunately, after one week of treatment, the family received additional bad news: Sieu was diagnosed with a rare genetic disease that will shorten his life to only a few more years. Although very upset by the news, the family still conveyed their gratitude to Donxa’s chairman, volunteers, and to the doctors who strived to find treatment for him. “We understand that he has a very short time for his life -we know that’s his destiny” they told us with sadness.
Sieu on the wheelchair
The family left in the early morning on 14th, July, 2010 to return to Binh Thuan and continue their fight against Sieu’s disease. Looking at his intelligent eyes, we still see the eyes of a boy with a dream to go to school and play football with his friends. Hopefully his last days will be full of laughter and happiness with love of his relatives and community.