Zaya's own letter (translated)

To born as a human being is harder than to put a single rice grain on the pick of a needle. Same as that, luckily I was born as a youngest daughter to my parents and a younger sister to my sister.

I love my life and I love living, I hate illness as much as I love life. I wish no one the pain I am feeling and illness that had encountered me.

When I am awake I wish, when I am asleep, I dream that I became healthy and a normal person, again.

My name is Zaya and I am 20 years old. Since I was 16 years old, I have been diagnosed by rheumatoid arthritis. I have taken every possible medicine and attended to every possible hospital, but at the end the illness didn’t go but confined me to bed. I was trying hard, taking all the medications without skipping a single time, but for 4 years I am still battling with illness, nobody knows why it started.

I never expected that I will be ill this long. Since the day my middle finger got swollen I never was far away from hospitals. Every single day this disease was and is getting worse, eventually attacking all the fingers, then elbows, shoulders, then all the joins. And now it hurts even when I laugh.

When my friends and classmates from high school were entering their universities, studying, running and laughing happily, here I am in my bed. Not doing anything apart from lying, feeling pain and crying. I really do regret about my condition and the trouble I cause to my family.

After graduating high school in 2005, I was dreaming to study at a university, graduate it, work helping my parents and become a model citizen to contribute to the development of my country. With all these thoughts and dreams when I got sick I believed that I will recover and one day walk with confidence in my future and a smile in my face.

But, when my classmates were taking the university entrance examination, I was in a hospital watching the ceiling, wishing to be there. Since that time until now, I have spent every day in bed sharing my tears only with my blanket and my pillow.

Every night before going to sleep I wish to have a whole night sleep without pain, but this wish has no success. I cry all nights in a secret.

My family feels desperate not being able to help me or share my pain. I can see in their faces that they smile when they look at me, but when they turn around, they cry. Of course, it is painful to see how the girl, who has been a sun in their lives, can not even drink, holding a cup by herself. Can you imagine how hard it is for me to see their hearts crying silently?

Well, last year my parents sold our 2 room apartment - my grandfather’s life work, and started to save some money for my treatment outside of Mongolia. The 16 million Mongolian tugrigs (12,000$), price for our only capital, was not enough to go abroad for my treatment. Thus, the parents decided to put them in “Tugs Erdene” Savings and Credit Cooperation ending up with nothing. On May 5 2006 the Cooperation had gone bankrupt. Now, we have nothing, no money, no apartment but only financial problems.

My parents are blaming themselves for trusting the Savings and Credit Cooperation and to being able to do anything to help their little girl who is suffering and crying by their side.

Any illness comes without invitation and doesn’t wait for time. What shall I believe to? My condition is worsening day by day and my patience is narrowing. Healthy people might not imagine how hard it is to even to talk and smile when any of actions brings me more pain.

Television programs in Ulaanbaatar like “Stranger” of 25^th TV, “Dreams come true” of USB TV had broadcasted about me, newspapers like “Today”, “Ardin Erkh” and “Odoo tsag” has publicized articles about me. We have addressed Mr. Ts.Munkh-Orgil – Minister of Legal Affairs, L.Gundalai, former Minister of Health, Rotary Foundation in Mongolia and every other possible organization yet without clear response.

This kind of a poor and ill girl is asking for your help, which means to give me a future, a hope to live. I want to live and walk just like other people at least one day. My living days are getting limited. Please help me to get healthy, again.

One hospital in South Korea offered me to do analysis and diagnosis of my disease. My parents, who are going to look after me there, also need a round trip financing but they have spent all they have got in my daily treatments which are very expensive.

I am asking and sending you my last hope and dream to walk again with this letter. Even though, I am ill on bedrest, my desire to live and get healthy is getting stronger day by day. Please send your helping hand to me.

Sincerely yours,

Zaya

Translated by Misty

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Her only wish is to live…

And that’s what kept her spirit alive in the four-year long battle with a debilitating illness which eventually confined her to bed. Zaya was only 16 when first diagnosed with Rheumatoid arthritis. She fought hard, took her medications with faith, and graduated high school with honors. Unfortunately, her dreams and goals were cut short by the agonizing pain and side effects from medications. Large doses of antibiotics and pain medications have taken toll on her young body and have lead to other complications.

She recently suffered a stroke and spent 10 days in a coma. The relief her loved ones felt when she finally regained consciousness was soon replaced by dismay at the discovery of newly developed bedsores on her body by nurses’ negligence and lack of proper care. Left open and unattended, the lesions have progressed deeper into her flesh leaving gaping holes on her back and feet. Now she has lost feeling in one of her legs, can’t move her body, has to lie on her stomach and can’t sit up.

A true and full diagnosis is yet to be determined due to the limited expertise and lack of medical technology in Mongolia. Left to their own devices, her family is seeking treatment elsewhere. Two months have already passed since a positive response was received from a hospital in South Korea. The glimmer of hope has been interrupted by their lack of funds. Even after the 50% discount offered by the hospital, the cost of initial round of diagnosis and treatment comes to $10,000 which is hard to come by in that part of the world.

In April, Zaya’s sister started a blog called Desire to Live [lovelife.delhii.net] as an outlet for her pain and frustration in watching her baby sister wither away helplessly. Little did she know that one day her obscure little blog would be discovered by fellow bloggers and would move everyone to tears. Awed by Zaya’s unwavering faith in beating the illness, we got determined to find a solution to put an end to her suffering. On June 23, we celebrated her 20th birthday and delivered roses and gifts along with birthday wishes and heartwarming messages from our readers. The little act of kindness and support has become a source of renewed hope in Zaya’s heart. Now Zaya knows that she and her family are not alone in their struggle. To date, we raised $4100 in donations, but yet to reach the milestone.

Please help us grant her only wish… a wish to LIVE.

"Save her life" movement among Mongolians

Last Saturday I logged-in to a virtual community of Mongolians in Japan which I do sometimes. There I found about a blog of one Mongolian girl who's sister is very sick, has had a bed regime for past 3 years.

First she started her blog writing how hard is for her to watch her sister suffering lot of pain but not being able to feel her pain instead of her. Her blog was just like an diary, but some people found her blog , start to read and leave comments. But as you know that we are few, and maybe not so many young people read blogs or have blogs. In her blog I saw 7-8 people connected.
Before this day I never knew about blogs in Mongolian language.

In some point of time the condition of the sick girl (her name is Zaya) became worse, she got a stroke , and was unconscious in intensive care for 9 days. It is hard to believe but after those days her skin got torn in multiple places, back of the head, along spinal cord, ankles and heels .
But still Mongolian doctors and nurses (who are low paid) were not caring enough so that the ulcers got bigger and deeper.
In the blog there are pictures of ulcers, they are really scary.

Then some of people who read the blog suggested to start a movement in Mongolia and among Mongolians who live outside of the country to help this girl to go abroad and get an appropriate treatment.

I am not a doctor, but I will try to explain here in English what kind of disease she has.

She has been sick by Rheumatoid juvenile arthritis. RA is characterized by inflammation of the synovial fluid surrounding the joints. This causes pain, stiffness, warmth, redness and swelling of the joints. The inflammation serves no useful purpose and the enzymes it releases actually causes damage to the joint.

The first time as the sister wrote it started with inflammation of a finger, then stiffness and pain in all joints, now sometimes Zaya's jaw joints are not functioning well.

The only available treatment at least in current Mongolia, for this disease are anti-inflammatory drugs (like aspirin). Although NSAIDs work well, long-term use can cause stomach problems, such as ulcers and bleeding, and possible heart problems.

People with arthritis usually have chronic pain. Pain medication is used to treat the chronic pain associated with arthritis and has no impact on the underlying disease. In general, doctors prescribe pain medication to be taken at the first time such as paracetamol (non-narcotic), then some narcotic.

After a long time taking antibiotics, Zaya started to suffer from yeast infections in her mouth.

Complications : Rheumatoid vasculitis (inflammation of the blood vessels) is a serious , potentially life-threatening complication of RA. It can lead to skin ulcerations and infections, bleeding stomach ulcers, and nerve problems that cause pain, numbness, or tingling.

!!! Now I think that Zaya's skin problems are RV complications. !!!

Please if you know something helpful about it, leave comments or contact me.
Thank you for reading this.

Tsena.