In April of 2007, I returned to Hanoi, Vietnam's capital and second largest city, where three young Gaucher patients have been receiving enzyme replacement therapy for several years through the Gaucher Initiative. Each visit reminds me of the first time that I experienced Hanoi – its wide, multi-lane streets chock full of people on motor scooters moving as closely together as a school of fish. Now I’m used to the hustle and bustle of the city but I’ve yet to conquer my fear of crossing the streets there. The motor scooters move right around you as you try to cross! Until recently there were no stoplights at all in the city, but now there are a few lights at main street crossings. The crowds of people and flurry of activity energized me as I headed off to visit the three young Vietnamese Gaucher patients.
First to the Hospital
My first destination in Hanoi was the National Hospital of Pediatrics (NHP). NHP is a very large hospital with more than 1000 staff treating patients who are referred from throughout the northern part of Vietnam. NHP is about 40 years old and was badly damaged during the Vietnam War. Fortunately it was rebuilt and has been active since the early 1980s. As usual, the clinics and hallways were overflowing with families waiting to see a medical practitioner for care.
Tu, Tuan and Minh
Minh, Tu and Tuan awaiting their infusions.
When I entered the hematology clinic waiting area I was greeted by the brightly smiling faces of Tu (7 years of age), his sister Tuan (17 years of age), and Minh (3 years of age). Little Minh was almost hidden behind a beautiful bouquet of flowers that she gave to me.
We first learned about Tu and Tuan in 2001 when Dave Fleming, group senior vice president at Genzyme, proposed a Vietnam Children’s Initiative to help provide Gaucher patients access to Cerezyme. We enlisted the help of Dr. Nguyen Cong Khanh, a Professor of Pediatric Hematology and Oncology at NHP, to identify local Gaucher patients. Over the years Dr. Khanh had seen a few Gaucher patients but since there was no therapy available he had lost track of them. He promised to investigate the whereabouts of the children he had met with Gaucher disease – no easy task since there were no records with their names and locations available.
A few months after we first spoke with Dr. Khanh we were delighted to learn that he had located a brother and sister with Gaucher disease, Tu and Tuan, that he met years earlier. When Dr. Khanh told the children’s parents that it was possible for their children to receive treatment through the Gaucher Initiative the parents were thrilled and eagerly agreed to bring the children to the hospital for their first infusions. That was in 2001, and I have had the good fortune of returning periodically and seeing the changes as they grow and thrive because of the enzyme replacement therapy.
Minh is the only child of a young couple living in the Hanoi area and she was diagnosed with Type 3 Gaucher disease in 2005. It is good that Minh’s disease was detected when she was still very young since Type 3 Gaucher disease is quite rare and involves the central nervous system. Since Minh began on Cerezyme therapy she has almost doubled her weight and has grown several inches taller.
Cerezyme Infusions
Nurses playing with finger puppets.
As the nurses began preparations for the children’s two-hour Cerezyme infusions, I met with Dr. Khanh, and Dr. Nguyen Hoang Nam, Dr. Khanh’s son who is also a hematologist and cares for the children. The doctors were very pleased with the ongoing progress of the children, especially the dramatic improvement in Minh’s condition. They were also happy to learn that Genzyme’s medical director for the Southeast Asia region, Dr. Margarita "Margie" Jimenez, would be visiting them soon and was closely accessible in nearby Singapore for any medical questions or concerns.
As we came back to join the families in the infusion room, the nurses had the beanie baby toys I had brought for the children on their fingers like little puppets. They were giggling and laughing with the children. The nurses bring such positive energy to the children and through their silly antics they lighten the mood and alleviate the children’s anxiety.
A Long Trip
Tu and Tuan live in a remote village in the foothills. They used to journey several hours with their parents on a two-seat motor scooter every two weeks to get to the hospital for their treatments. Fortunately, now they can take the bus to the hospital. Their parents are completely committed to their children’s health and make the trip without any complaints. Minh and her family live in the city, so once the children were done with their infusions we headed to her home for lunch.
A Traditional Vietnamese Lunch
Having lunch with Minh's family.
We arrived at Minh’s house, where we found four generations of her family living together. More than ten members of Minh’s extended family joined us for a traditional Vietnamese lunch which was served buffet style on straw mats on the floor. We enjoyed a delicious assortment of spicy fish, chicken, and home grown vegetables. I can’t think of a better way to have celebrated our time together and most importantly the children’s good health.
A Trip to the Country
Minh, Tuan and family in front of
a Catholic church.
After finishing our meal, we all left Minh’s home to visit Tu and Tuan’s home. Every time I come to Hanoi, Tu and Tuan’s parents have graciously invited me to visit their home in the country. I decided that today was the day! As we traveled away from Hanoi we saw fewer motor scooters and more horse carts and bicycles. We passed through green rice fields and little villages clustered together. Tu and Tuan live in a tiny village in the foothills. At its center is a beautiful Catholic church, a great source of pride for the community. The village is comprised of both Catholics and Buddhists.
Minh and Tuan.
When we arrived at Tu and Tuan’s house we were greeted by three generations of family. It was delightful watching little Minh play with Tuan. The children have formed a close bond over the past two years that they’ve been receiving bi-monthly infusions. Minh looks up to Tuan as a “big brother” and Tuan is very watchful over her as they play. Tu is blossoming into a lovely young lady, very charming in her shyness. It was truly inspirational to see Tuan and Minh romp and laugh, especially considering how much suffering they endured before starting on Cerezyme. I marvel at how much the children grow each time that I see them and I look forward to my next trip to Vietnam.
We left the village late in the afternoon and made our way back to Hanoi. We dropped Minh’s parents off on the outskirts of the city, where they picked up their scooter and headed for their home. Before Dr. Nam returned to the hospital for several more hours of work, he graciously thanked me and Genzyme for bringing the Gaucher Initiative face-to-face to the children of Vietnam. It was certainly a long and memorable day!
When I see the smiles of the patients and nurses, it's great to know that there are still private organizations like Genzyme who goes out to help the needy, especially in this area of orphan drugs, where we do not hear in our daily news.
By providing hope, you have create a dream for them to live a normal life.
Hope more companies will follow suit! Kudoes to your efforts!
Posted by: Jason (Singapore) | Thursday, April 17, 2008 at 03:21 AM