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.
After a night of wind and rain, the sky in Beijing was so crystal clear, in deep blue, it just doesn’t look real. In the morning, our staff started to get busy, preparing snacks, water, and things for contingencies. Cameras, video cams, volunteer ID cards, contact and confirmation for psychological counseling teacher ...... finally everything is in place.
Children and parents started arriving at YMCA swimming pool. Kids jumped around, running and full of expectation. Parents got together sharing their experience in educating, caring for their children. And kept their eyes on their children all the time to ensure their safety.
Volunteers arrived much earlier in the morning and worked with our staff to review today’s arrangements to ensure the safety of everyone. To ensure our children will experience the fun of playing in the water as much as possible.
Most children and parents have arrived. Special "Family Locker Room" was arranged for parents to help their children with dressing. Once done with putting on the swimming suit, staff explained safety instructions. Wow, finally the moment has arrived for them to go into the pool.
For those children who already know how to swim, they got into the pool and started showing different swimming postures right away. Our staff in the water takes care of children and parents. For those who don’t know how to swim, they were a little timid and scared at the beginning. Under the guidance and help from the staff and volunteers, they started warming up. The more they play, the more fun they have. Sparkling waves, splashes of water, joy, laughter, these children are so happy and have so much fun. These children are relatively more sensitive. They are more sensible to the good will from people around them, and from the society. They experienced, received all of this with their pure heart.
At the very beginning, parents took close care for their children. Gradually parents let them go and have swimming coaches teaching the kids how to swim. However, they never had their children out of their sight simply because they love their children so much. And for the same reason, they also want to set their children free and grow up.
At the same time, our psychological counseling teacher had conversation with parents to understand their mentality and to relieve their pressure. Almost each and every parent of hemophilia has too much sadness and tears in their life and their pain is hard to put into words. It is almost impossible to explain their feelings unless you’re in their shoes. Hemophilia Home is unable to have anything which can actually replace the pain they have suffered. However, we can offer our help and support, and to accompany them go through difficult times and ensure them we are always available when they need us.
Our activity for the day is about to come to a close. Children are reluctant to leave the pool and totally forgot it is getting late for the day. They enjoyed hydrophilic activities very much the same way as any other children. Parents shared their experience, felt recharged and more encouraged to take good care of their children in the future with confidence.
Original article written by Teng Xue, translated by Joe Hsu and edited by Yanyan Zhang
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