NEWS

Can you help Huang Dan?
 
Huang Dan is 22 years old and suffers from a rare genetic disease called epidermolysis bullosa (EB). She is a member of one of our lifestyle training groups. The disease means she has extremely fragile skin. The slightest knock or pressure creates a blister, which has to be lanced, and leaves a wound which takes some time to heal. There is no cure for EB, which considerably reduces life expectancy. If Huang Dan lived in a western country with a good health service, she would have a lot of pain and live a very challenged life. She might spend some three hours per day bandaging her wounds. But a lot of care is available. She would be able to get special wound dressings which do not stick to the wound and help a lot with the pain of the wounds. Many services are available free, which enable sufferers to live as normal a life as possible.
 
But Huang Dan lives in China, where there are either none of these services, or they are too expensive for her to afford. Her parents are divorced, and struggle to support themselves, which means they have no ability to help Huang Dan. She has been living with her father, who juggles various low-paying part time jobs to eke out a living in Shenzhen. Because of her father's low means, Huang Dan has had to pay rent to stay with her father, at Y500 per month. In order to earn this money, and to feed herself, she took to begging on the streets a couple of years ago. She does all her own cooking and housework. The inevitable dirty water she is exposed to results in infections in her wounds. EB wounds are very susceptible to infection.
 
Lack of money and lack of health services mean she has no care for her wounds, which are severe. She says there is no inch on her body of clear skin – her whole body is covered with sores like the ones on her arm in the photo. Her back is the worst. Every morning when she wakes up she has 3 – 5 new blisters, sometimes 10 – 20. There is no sterile needle or surgical scalpel available so she lances the blisters with a non-sterile needle made as clean as possible with alcohol. After this she has a shower, and covers the open wounds with toilet paper. In the shower she washes off the toilet paper dressings from the previous day. If she doesn't wash them off they will start to go sticky. Many of her wounds are sceptic and inevitably infected.
 
The natural course of EB in children is to retard physical development, because children with severe EB need three times the calories that healthy children need. This is because the body uses up so much extra energy in healing wounds all the time. Also severe EB causes blisters internally as well as externally. Blisters in the throat make swallowing even ordinary food difficult. However ,  children in the west can get many dietary supplements to counteract this retardation. As a child in China, Huang Dan missed out of any extra dietary care. She is very small with an obviously retarded physical development. She suffers internal problems with EB. For instance she gets blisters in her eyes and throat. But she is philosophical. “I've grown up with it so I'm used to it,” she says.  Her greatest immediate problem is her hands. A common manifestation of her type of EB (recessive dystrophic EB) is fusion of fingers, which can be seen in the photo. Unwanted skin grows over the fingers, fusing them together. Huang Dan is finding it more and more difficult to do anything with her hands, as they are becoming more and more distorted.
 
There is nothing retarded about her mental development, however. She is very aware and able to communicate the details of her medical condition. She is following advances being made in stem cell treatment, and expresses the hope that she could be healed through this kind of treatment one day. She has become a Christian, and believes that her situation can improve through prayer. She also wants to stop begging as she thinks she shouldn't need to do this. Some local Christians have given her some short term financial support. She teaches us all how to live a Christian lifestyle by her example of patience and quiet optimism in the face of seemingly insuperable difficulties. 
 
We have decided to help Huang Dan in a practical way, as well as pray for her. Prince of Wales Hospital in Hong Kong have agreed to admit her as part of a medical research study on new types of wound dressing. She will come to Hong Kong for around one month and be a day patient at the hospital. She will receive valuable education on how to care for her wounds. Professor Andrew Burd has kindly offered to take her as a patient. Professor Burd is a plastic surgeon with experience of assisting EB patients, and may be able to operate surgically to enable her to retain the use of her hands. We hope to provide her with an on-going supply of appropriate dressings which will reduce her pain and substantially improve her quality of life.
 
We are now conducting a financial appeal to enable all this to happen. There is no cost to the education in wound care and bandaging at Prince of Wales Hospital as this is part of a medical research study. However, we will need to meet the costs of travel to Hong Kong and accommodation in Hong Kong for Huang Dan and her mother, who will accompany her. After the hospital treatment, provision on-going dressings will require a sponsor or sponsors, as the cost of this could be around HK$500 (about US$65) per week. If, as is likely, surgery is possible, costs of this will be HK$30 - 40K (US$4-5K). No government assistance is available as Huang Dan is from mainland China.
 
If you yourself, or a church or charitable organization you know, would be interested in helping in practical assistance, finance and/or prayer, please contact us today.
 
More details on EB, the medical condition, can be viewed on www.debra.org , www.debra.org.uk , www.debra.org.nz , www.debra.org.cn (in Chinese).

Hi everyone

At last another newsletter from Robin! We have had an incredible year and we have seen the Lord’s supply come through in awesome ways. Walking with Jesus is always challenging and exciting. Newsletters have been far apart as I never managed to get my computers, with address books, sorted out earlier (very complicated story which I won't go into).

We are back in Hong Kong, Margaret having been offered a job from our long term Hong Kong friends from Keystone Education Centre. She is offering professional development workshops and consultancy services to assist local Chinese English teachers teach effectively the new curriculum of the Hong Kong education system, which has been recently re-developed according to western models. Our new flat is in Sheung Shui, right on the border with mainland China.

I have been continuing to start new simple churches or training groups, and training saints and potential church planters, as led by the Lord. We had a trip to New Zealand, where we enjoyed connecting with friends, in August. This was followed for me by a visit to Bandung in Indonesia in September, to attend a conference (the third Asian House Church conference) and organize a multi-national team to give training to local Indonesian house churches. Our team of Fritz, Irvin, Maclin, Jeff, Bernice, Martin and myself all got on well together, and enjoyed wonderful hospitality from our Indonesian hosts, John and Ninik, Billy, Martin and others. A number of healing, prayer and simple church meetings were held, and hosts and guests learned from each other.

My time is currently largely focused on a local network of some eight simple churches / training groups that have grown out of the ministry here, encouraging them to multiply and be part of a large local church planting movement. The Lord has been drawing my attention to the fact that no tools are enough to create momentum and growth – only He Himself can bring that dimension to our ministries. So I have been pouring afresh over the Gospels and really seeking to connect with Him anew through His stories, miracles and preaching. At a typical church meeting we read together a story of or about Jesus. Then we spend 5 minutes in silence, each reading the story quietly. In meetings so far we have done the Luke 15 prodigal son story, the Matthew 18 story on forgiveness, and the John 15 discourse on abiding in the vine. It really is gratifying to see how the believers, many of whom are new believers, respond to these stories. I ask them to break into groups of three and discuss four questions:


What happens in this story / what does this passage say?

What does it mean to me personally?

What should I do?

Who should I share this truth with?
 

If we approach these stories with simple faith that God will speak to us, and we make ourselves accountable to obey what He does speak, He will really start to move amongst us. Why not start today, meet with someone, and read one of Jesus’ stories. Start with prayer asking God to speak to you through the story. And do what He says. Then do it every day! There are many fine preachers in the Body of Christ today. But I’ve never heard any as good as Jesus. And Jesus’ sermons were recorded and translated!

Another focus is I’m on a steering group for a World House Church conference in 2009. Details sketchy so far but it may well be in Malaysia or India – please contact if you’d like to come. Hear what God is doing around the world through the organic / simple / micro / house / cpm church movement!

Love and blessings to all of you

Robin