To build a stage for the hemophilia patients to show their talents in 2014, we organized a choir, which had been a dream of the workers of Hemophilia Home. For all kinds of reasons as money or medicine shortage and performing opportunities, the dream had not been fulfilled until 2014.

In a activity hosted by Soong Ching Ling Foundation, we connected with the organization. The activity is an art festival for youth. Art groups who are invited on the show have to experience rounds of selection. Considering we are not professional art troupe. After we told the staff of Soong Ching Ling Foundation our actual situations, they decided to discuss in the meeting. We were waiting nervously.

Soony Ching Ling Foundation agreed our demands and promised to arrange our performances in priority, because they did not want our children to wait for a long time. With the news, we could not help jumping for joys. We were inspired to be accepted and confirmed the other public welfare organization. We would value the hard-earned performing opportunity.

On July 27, it was the first rehearsal of the choir. Children and their parents and our volunteers came to the site early. At the beginning, the children seemed shy and restrained. They were sitting silently and listened to the arrangement of the teacher. After a while, they became naughty and did what their like as falling behind the rhythm, looking around, missing the lyrics, playing hide-and-seek, etc. Some of parents gave instructions patiently and some of them criticized strictly. Some of the parents asked their children out and talked to them separately. Luckily, the voluntary teacher is professional and experienced. The chorus became harmonious.
 
Early in the morning, our 2 staff began to busy for all kinds of logistic chores for the performance. During the lunch time, the staff and volunteers discussed for every detail. When they got everything settle down, they were sweating all over. For the whole day’s hard work, they were worn out, but they were still happy. It’s our patients’ own choir. Giving a name to it means a lot. People advised to collect name from the internet. There are various names coming: Little Red Person, Red Boat, Red Dragon Fly, etc. Finally, the name of Red Apple made an impression, and the name was decided. 

Hemophilia Home is a nonprofit established to improve the quality of life for patients with hemophilia by collecting knowledge on hemophilia and assisting poor patients. Hemophilia Home is in Beijing, China.

Hemophilia is caused by congenital deficiency that creates abnormal blood clotting. In the most severe situation, patients may develop spontaneous joint bleeding.  In the past, patients and their families thought it was better for them not to exercise. In fact, just the opposite, appropriate activities, muscle and joint exercise could actually help.  

Swimming is the best exercise for hemophilia. The joints carry much less body weight in the water, so all joints in the body can get proper exercise to increase musculoskeletal strength and reduce the probability of bleeding, as result.
In 2014, Hemophilia Home once again launched series of activities for hemophilic children. After evaluating multiple swimming pools, Hemophilia Home organized an event at YMCA swimming pool on June 7 for hemophilia adults and children in Beijing.

Hemophilia Home is a nonprofit established to improve the quality of life for patients with hemophilia by collecting knowledge on hemophilia and assisting poor patients. Hemophilia Home is in Beijing, China.

Han Yu’s “Early Springs” describe the beauty of early spring, and we have indeed, had a wonderful April. There is nothing more blessed than staying away from the hustle and bustle of big city and going back to nature with relaxing mood.  For those with Hemophilia, these moments are important. Many hemophilic children avoid going outside for fear of risks from bleeding. Just one cut and they could end up in bed for several days.   

In 2014, Hemophilia Home once again launched series of activities for hemophilia social integration. Prior to the event, we planned for scenic routes, coordinated volunteers, logistics and checked out the site first.  On April 27, we held our first event in Beijing, called:  “Spring Outing, Hemophilia back to Nature”.  Both adults and children with hemophilia in Beijing, and those who come to Beijing for hemophilia treatment joined together to visit Riverfront park Vista Boulevard in ShiJingShan District.  Activities include fishing, kite flying and picnics, etc.

Hemophilia Home is a nonprofit established to improve the quality of life for patients with hemophilia by collecting knowledge on hemophilia and assisting poor patients.

My son, born in 2010, brought a lot of happiness to my family. My child grew up day by day, but his body began to show black and blue marks when he was 7 months old. But I did not pay special attention to this, because I worked in the city and I thought it was normal that a child would fall over.

This was until December 2011 when I found my child’s mouth was bleeding, oozing a little, not much, but this blood could not be stopped. He had been bleeding for 4 days when I took him to the hospital. The doctor said it was a blood problem and asked us to take him to Nanjing Children’s Hospital. My son was diagnosed with hemophilia and had to transfuse FVIII regularly. But this illness cannot be completely cured and FVIII transfusions cost a lot of money.

My family is poor and the treatment costs so much money, so my relatives urged me to abandon the child. Seeing my wife spending her days in tears and without food, I had to plan to give up my child.    

I had planned to take my child to Xi’an and leave him in a big hospital, which might be better for him. But when I saw my son’s innocent smile and my wife’s unwilling eyes, I blamed myself deeply and felt pain in my heart. I decided to take my child back home and never think of giving up him again.

Now I am working hard to earn as much money as possible for my son. Though my pay is not high, I will try my best. Whatever the result, I will never give up.

Original article written by Shibo Sun, translated by Maggie Li and edited by Yanyan Zhang

Hemophilia Home is a nonprofit established to improve the quality of life for patients with hemophilia by collecting knowledge on hemophilia and assisting poor patients.

In January, 2013, Hemophilia Home sent an application to World Federation of Hemophilia (WFH), hoping they could send medicine to Beijing via airmail as soon as possible. The next day, WFH sent out medicine via Federal Express. The medicine arrived at Beijing Airport on January 31, but then we were presented with new difficulties. We had to pay the high tariff and value-added tax just to accept the donation. Additionally, the medicine was close to expiring, and we had to find a solution.  

Our motivation lies in trying to relieve our patients' suffering. We started to find relevant sectors, but there was no progress by February 23. In desperation, we sent an e-mail to WFH and asked them to take back the medicine and send it to other countries to avoid waste, but WFH replied that we could not return the medicine. If it could not go through the customs successfully, it had to be destroyed on the spot.  With this reply, we promised to make our last effort to WFH.

We are a happy family of 6, but we are also filled with anxiety. Since my son has been diagnosed with hemophilia, we always fear he will bump against something. 

When my son, Jin Peng, was 9 months old, we found some bruises on his back, arms and legs. We didn't pay special attention to it at the beginning. Some of the bruises came and went, but when some didn't go away, we began to worry and took him to see a doctor at a local hospital. After the examination, the doctor suggested that we take Jin Peng to a hospital in Beijing for more tests. We went to Beijing next day and saw a doctor at the Children’s Hospital. After two rounds of examination, the doctor referred us to another hospital for further testing. At this hospital, our son was diagnosed as hemophilia. Whenever he bleeds, he needs to inject something called a factor VIII.