Iseek Cultural Center: Visiting Children with PAH

Junzun with his friends

Iseek Cultural Center is a public welfare organization initiated by patients with PAH (pulmonary artery hypertension), which aims to provide support and service for people with invisible disabilities as PAH.

On March 9, 2014, the staff of Iseek and 3 volunteers came to see children with PAH and their family members, bringing clothes donated by some volunteers. After stepping out of the bus, we saw a girl leaning on her mother’s shoulder. The girl was Ding Yuxuan. She suffered from an episode of suffocation in 2011. During her rescue, the lack of oxygen damaged her brain and gave her cerebral palsy. Since then, the girl has had to lean on her mother. Apart from taking medicine for PAH, she has had to accept acupuncture therapy.  

The room is small, but warm. Yuxuan’s family comes from Anhui. Her father works for a company and makes a salary of 3000 yuan a month. Her father has to work overtime in order to earn more. Her mother has no job, because she has to take care of Yuxuan. 

Yuxuan’s mother told us, “Though we are living away from our hometown, we still have a warm home. If we stay together, we are a family.”

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Yuxuan and us

Yuxuan's mom (R) and Junzun's mom (L)

One of the mothers we met that day knew about ISEEK and told us about a child suffering from PAH. After hearing her story we became very concerned.          

The child’s name is Qi Junzun. He is 13. He looks very cute. He coughed up blood yesterday and looked weak. He is as naughty as his contemporaries. He was watching TV with his pals in the lobby when we met him. He took us to meet his parents. His parents took him from place to place in order to find a good hospital for the treatment. However, expensive medicine will bring the family into heavy debt. Junzun is luckily able to face all of this with maturity and an obstinacy older than his years.  

We asked him if he was scared when he coughed up blood. He said, “No, there’s no reason to be scared.” Mothers are always so afraid for their children. For their children they will leave their hometowns, work hard and save all their money. For their children, they have to be strong. 

Now Yuxuan and Junzun are enrolled in standard treatment and are taking targeting drugs. They also applied for an aid project- the Blue Lips Project of Iseek. For PAH patients, targeted drugs must be taken long term. Only two cities in China have these drugs under their medical insurance policy. Otherwise the patient has to pay 12000 RMB per month. For most families, this is an incredibly heavy burden. They end up having to pay 2000-3000 RMB a month in all. 

To promote putting PAH medicine on the list of approved medications for medical insurance is one of our priorities in the coming year. We hope more and more organizations will join us and care for children with PAH. They need more care and support from people around them. Iseek is the only organization in China to work with PAH sufferers. We have about 50 medical experts who are willing to work with other organizations and work together to improve the living conditions of those with PAH.   

Original article written by Zhe Fan, translated by Maggie Li, Edited by Yanyan Zhang