Sunday, 31. August 2014
07. 06. 12. - 13:45
Tragically Li Hongfang may finally get a happy ending to her story after neighbours persuaded local council chiefs to stump up the cash for her treatment.
Now aged 40, her troubles started in 2001 when she noticed a small swelling had appeared on her forehead.
At the time she lived with her husband and two sons in Tianchao village, in Qianxian county, in west China’s Shaanxi province.
She said: "We didn't have much money but we were very happy and we loved each other and our two boys. I would say life was good then. I didn't think anything of it when I got a small swelling on my forehead – I thought it was probably just an insect bite.
"It didn't even itch or ache in anyway – but it also didn't go away and in fact just got bigger and bigger."
In China healthcare, especially for the poor, disintegrated in recent decades when the old state system was dismantled and medical fees introduced. Many cannot get access to it or simply cannot afford it and many of the 700 million people in the countryside have to travel to cities to get decent care.
Officials are debating a programme which aims to provide health insurance for all its 1.3 billion people by 2020 but at the moment the Chinese health system presently falls far behind the needs of those it is supposed to be treating.
For Li Hongfang who has no health care it meant she knew she would have to foot the bill herself. So grabbing her savings of 30 GBP and two bags of wheat she decided to go to the regional hospital, who told they were unable to help as they didn't know what the problem was and sent her to a hospital in the provincial capital Xi’an to have more detailed tests.
She said: "They took one look at the 30 GBP and told me it would cost a lot more than that – when they told me how much it would cost I decided just to leave it and went back home.
"I tried to dismiss it from my mind although the problem continued to grow and by 2005 it was extreme – it was extremely painful and I decided I would finally have to get the money together to pay the medical bills."
As is typical in China she borrowed money from friends and family to meet the medical bill and travelled for the operation to have the lump removed – but her joy at having a normal face again was short lived as within a month seven new swellings had appeared on her head.
She went back to doctors who told her she had a type of cancer known as "Chordoma skeletal muscle disease". According to doctors Chordoma is a rare, slow-growing neoplasm thought to arise from cellular remnants of the notochord.
They told her she would need to come up with the 60,000 GBP to cover the operation costs – an amount impossible for an ordinary villager to find.
She said: "I just gave up on getting me cured then and decided to make the best of it. I thought things were pretty bad then and they couldn't get worse, but a short while later my husband died and I was alone. I guess that was probably the lowest point in the whole experience because I just felt like killing myself but then I thought of my boys and somewhere I found the strength to go on."
And all the time her face continued to twist and deformed itself leaving her increasingly isolated to all but her closest neighbours and family.
By 2009 she met Guo Yingping, aged 40, who as an orphan knew something about loneliness and the two became friends and later married.
But shortly after the marriage the disease of her face started to get much worse and as she saw how ugly she was becoming she had asked her husband to leave her.
She said: "I told him that I was becoming so ugly I would understand if he wanted to leave and find a new woman to share his life. I did not expect him to stay but he told me that he had never had a family – and since he had been with me and my boys finally he knew what it was like to be part of the family and that he would never leave me.
"What's more he worked as hard as he could on building sites to get every penny that we could to pay for my medical bills. I told him I didn't understand why he stayed with me and he used to make a joke of it – saying that at least he didn't have to worry about me running away because I was so unique he would always be able to pick me out in a crowd. But he also told me that he didn't care what I looked like – he told me that he only ever saw the inner me and that I was a very beautiful woman to him with a good heart."
But despite the couple's efforts all of their savings were but a drop in the ocean compared to the huge medical costs they were having to meet and with no other option Li Hongfang started travelling to Xi’an at the end of last year to beg in the streets – sleeping rough - and because of her looks gathering donations from locals.
She set herself small targets of amounts to raise and as soon as she had enough for the next stage of medical bills she would admit herself to hospital for treatment.
She said: "I miss my boys and my husband when I was away but I also met people that gave me hope. Sometimes I met bus drivers for example that refused to take me – they shut the doors when I tried to get on the bus to go to the capital – but then I met another bus driver who refused to take any money from me and insisted on me travelling for free." She refused – and insisted on paying – but thanked the man for his kindness.
At another time on the street a little boy had tried to give her a single penny but his mother had pulled him back, telling him that she was a monster and it would bring bad luck.
She said: "Of all of the things that have happened to me that was one of the memories that hurts the most – I know that a lot of people see me as a monster but I am just a normal woman and a mother inside."
The treatment has slowed down the condition but she is still becoming more ill everyday.
Her throat has become so contracted that she cannot even eat noodles and can only have a liquidised soup. She worries that soon she will not be able to eat anything at all.
And two years ago she said the worst of all things happened when her 15-year-old son and oldest boy vanished leaving a note that the family were not to look for him and that he had gone away to look for work.
She said: "He was doing so well in school but I know that he felt he should be working to help us pay my medical bills. A short while later money arrived and it continued to arrive and occasionally he called but he never told me what he was doing. "
She later found out that the boy aged 15 was begging in order to get money for his mother and was sending back as much as he could every month to pay for her medical bills. What was worse he also told his brother aged 14 what he was doing and the 14-year-old also left home to start begging so he also contribute to his mother's treatment.
She said: "I was distraught – I want my boys to have a wonderful future and it's what keeps me going – but they are sacrificing that for me which makes me so proud of them but also so sad.
"I knew that they loved me that I always tried to keep my suffering away from them to protect them – we have a dog – Beibei - and when I got really low I would take him into the woods and sit with him and cry. He was my consolation and my person to speak to about my troubles. I didn't want to burden my husband or my children."
But when neighbours heard that her youngest son was also now begging to pay for his mother's medical treatment they pressurised local council officials and finally they agreed to pay for medical treatment after a campaign on the chinese version of twitter.
Officials also contacted both boys and said that now that their mother's medical bills were paid they wanted them to come back and continue their studies.
Li Hongfang said: "I am hoping doctors can do something for me but the best news will be if my boys come home and continue their studies. Then I will be able to handle whatever else life throws at me."
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