Please help Disabled Woman With Rare Disease
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Thread: Please help Disabled Woman With Rare Disease

  1. #1
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    Please help Disabled Woman With Rare Disease

    I did up this website for this woman, Lim Pei Lee, nearly three years ago
    and had not followed up on it for some time.

    http://limpeilee.webs.com


    She has the very rare genetic disease, Neureofibromatosis Type 2, or NF2. As far as
    I know, there are just about four people in this country who has NF2, and all are females.

    Yvonne Foong Ming Niang
    Lim Pei Lee
    Keisha Petrus
    Syahidah Ishak

    There's also a 7-year old boy at the SS3/39 branch of the Taman Megah Disabled
    Children's home who has NF, but I am not sure if it is NF1 or NF2. NF2 is more
    severe than NF1 with a far higher mortality rate. Average age of death in NF2
    is around 36, compared to 55 - 59 for NF1.

    NF2 is extremely rare, occuring at 1 in 50,000 births, compared to NF1 at 1 in 4,000.


    NF2 basically causes the growth of noncancerous tumors all over the brain and
    nervous system.

    Most of you would probably know about Yvonne. Apparently she's just gone
    over to the US for further surgery after managing to receive some donations.

    http://www.yvonnefoong.com/


    I had visited Pei Lee a couple of times at that time, and did communicate with
    her by SMS severat times, but have not kept in touch for the past year.


    Reading Yvonne's pages two days ago, I found out the Pei Lee had gone for surgery
    at the KL General Hospital last month by Dr Datuk Saffari Haspani, the chief
    neurosurgeon there. It seems a few tumors along her spine and brainstem were removed.

    http://www.yvonnefoong.com/2012/10/0...-and-recovery/

    http://www.yvonnefoong.com/2012/10/0...ly-worked-out/


    Reading the above, I thought she was recovering well. However, talking to her father on
    the phone just now, he said that both her legs were already immobile, i.e. she was now
    a cripple.

    He said the she still has some use of her right arm, but her left arm had gone totally limp
    after the surgery. Apparently the surgeon had to cut thru some of the nerve fibers at that
    part of her brain in order to remove a tumor. Her dad said the tumors were "quite large".


    Her mum, elder brother and elder sister had also died from this genetic disease years ago.
    NF2 does not skip generations, so this would have come from her mum.

    She has a surviving disease-free younger brother, but it seems he is pretty much
    the "tidak apa" type and doesn't care very much about her. Once her father is gone,
    she is essentially on her own.


    She has her own blog in Mandarin here, but it has not been updated for some time,
    likely due to her deteriorating condition. Her father said she lost the use of her
    legs some time this April, which would coincide with the last entry in her blog.

    http://peileelim.blogspot.com/



    If anyone may wish to contribute some donations to her, that would be nice.

    http://limpeilee.webs.com/donate.htm


    I checked with her father and her Public Bank savings account remains the same.


    They can be contacted here.

    http://limpeilee.webs.com/contactme.htm


    It is best to call her land line, though her father may not be around some of the time.

    Note that she is totally deaf, so her father will have to answer her mobile phone if
    you call that. He said that he does not even know how to use it (he is mostly
    illiterate), but I told him to just learn how to use the green and red buttons on top,
    and to carry it with him at all times.

    I am unsure if she can still use her one arm to text messages.

    Be aware that she is English illiterate, and can only converse in Mandarin
    or quite broken Malay.

  2. #2
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    And God bless people like you Tham for standing up and standing by those people who are unable to care for themselve. I salute you and your continuous attention rendered to Yvonne and Pei Lee.

    In fact I was only thinking of Yvonne Foong just a few days back and wondered how she was faring... and by coincidence you posted this today, many thanks...

  3. #3
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    Thank you, SiangMalam.

    I hope this thread may assist her in receiving some contributions towards her cause.

    Apparently she was supposed to have been operated on last year by a neurosurgeon at
    UMMC when she was still walking and in fair condition, but he seemed to be too busy
    and then went over to the US for a month or so for some seminar.

    After waiting patiently for him to return, her father said he subsequently declined to operate
    for unknown reasons. Whatever it was, she deteriorated not too long after that, losing
    the use of her legs.

  4. #4
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    Besides posting her blog, could you also just print her bank account here so its easier for some of us to make some contributions that some of us could possibly spare?

    p.s. can I also have your permission to send her bank account details to some friends of mine not in this forum, thank you...

  5. #5
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    Here's her bank account details again :


    Lim Pei Lee

    Savings Account Number : 4 - 44 84 968 - 17

    Public Bank Bhd
    Taman Sri Muda Branch,
    Shah Alam, Selangor

    Swift Code (for foreign wire transfers) : PBBEMYKL


    You are free to pass this on to any of your friends, of course.

  6. #6
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    A good Samaritan like you warn up the community with great love. Mother Teresa ever said this..."We can do no great things, only small things with great love.".

    Please PM me her mobile and IC numbers for me to do GIRO transfer.

    Thank you very much.

  7. #7
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    Thanks Tham... will do my small part....

  8. #8
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    Quote Originally Posted by HTCHONG View Post
    A good Samaritan like you warn up the community with
    great love. Mother Teresa ever said this..."We can do no great things, only small things
    with great love.".

    Please PM me her mobile and IC numbers for me to do GIRO transfer.

    Thank you very much.

    Thank you very much, Mr HT Chong, for your kind comments and gracious assistance.
    I have sent you a PM with her mobile and IC numbers.



    Quote Originally Posted by SiangMalam View Post
    Thanks Tham...
    will do my small part....

    Thank you for your kindness too, SiangMalam.



    I called her house just now and her father said she had been admitted to the Klang
    General Hospital last night, in Ward 7B. She was unconscious with a fever and he
    had to call a taxi to take her there.

    She is placed in a bed in the centre of the ward, as all the numbered beds are full.

    On admission, the doctors found that her urinary tract and a large bed sore
    at her back had been infected. She regained consciousness today.

    Her dad said the bed sore wound was huge, 4 inches wide and quite deep,
    exposing her spine. He mentioned that the nurses at KLGH were not very
    diligent in turning her over periodically and washing it.

    At home, he has to wash the wound daily, with an antiseptic wash, which I think
    is Hibiscrub, and dress it with an antiseptic cream. He had to buy both from the pharmacy
    at about RM 30 each, as the hospital did not supply it for free. All the nurses there
    did were to change some bandages on it now and then.

    Frankly, I think she needs full time private nursing care, but that would be extremely
    expensive.

    Her younger brother is never around.


    Her mobile phone was at home and switched off. I had a hard time teaching her father
    how to switch it on, answer and dial with it. He managed to switch it on and answer it,
    but could not dial out. I reloaded some credit in it yesterday, but am uncertain if she
    managed to get it.

    I told her dad to carry her phone with him. He's just gone over to the hospital to visit her
    at 5.30 pm. Any message sent to it will have to be read by Pei Lee if she still can, or
    others whom he shows it to, as he is illiterate.

  9. #9
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    Hi Mr. Tham,

    Please read my PM and I am hoping Pei Lee will recover soon. You are a very kind person.

  10. #10
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    Hi Mr Chong, I have just read your PM after coming back from Cheras
    and replied. I shall contact her father tomorrow to confirm.

    I am sure Pei Lee and her dad shall be most indebted to your graciousness.

  11. #11
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    Quote Originally Posted by Tham View Post
    Hi Mr Chong, I have just read your PM after coming back from Cheras
    and replied. I shall contact her father tomorrow to confirm.

    I am sure Pei Lee and her dad shall be most indebted to your graciousness.

    Hi Mr. Tham,

    Thank you for your kind words. In fact the words that you used are too “strong” for me to accept.

    There is nothing much I can do for Pei Lee. I am just hoping that Pei Lee will recover soon and the gift will bring some smiles to Pei Lee and her family.

    Again, thank you very much for your helps....

  12. #12
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    Don't worry, Mr Chong. The words are not too "strong", in fact I believe they
    are a very apt description.

    Her dad, after going out to the bank to check, called me earlier today and
    said that your gift is already in Pei Lee's account.

    The old man was indeed overjoyed, and told me to thank you very much for your
    good heart. I am sure Pei Lee would too, when he visits her at the hospital today
    to tell her the good news.

    The old man was very argumentative though, when I asked him to apply
    for her account to be converted to a joint one, so that either he or Pei Lee
    could withdraw the funds, particularly if anything happened to her at this stage,
    otherwise they would be frozen. He said it was too "troublesome", since
    donations like yours were few and far between. He would just use her ATM
    card to withdraw.

    Advising him to carry and use her mobile phone at all times met with the
    same stubborness, saying that it was "too heavy" and he did not know
    how to dial out. Asking him to just go to any handphone shop and ask the
    counter people there to check for him if the credit I had reloaded for him
    had gone in, while at the same time teaching him the few basic steps to
    use it, was answered with "people would not do that".

    If only there were more good people like you around, this world
    would be a far more joyful place for the rest to live in.

  13. #13
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    Hi Mr. Tham,

    I read Pei Lee’s Chinese Blog. I was annoyed when I read that her brother got to wait for 2 months for his tumor surgery despite her dad pleaded for helps. 2 months! I wondered could that be part of the causes of his death. My heart burns with anger whenever I see people are paying the price for the self-serving administrator!

    It has not been easy for Pei Lee. I pray and hoping that things will turn out well for her and her family, her smile is a consolation to me.

    Again, thank you very much....

  14. #14
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    Pei Lee Has Passed Away

    Dear Mr Chong,


    I called Pei Lee's dad in the early afternoon today, who happened to be at the hospital.

    He described what appeared to be Pei Lee choking on her own phlegm. He had asked
    for one of those suction pumps to be brought over for her, but was given the answer
    that the hospital did not have such a pump, and he had to purchase one of his own.

    I then called the hospital asking to speak to the administrator or chief medical officer,
    but dummy operator did not seem to understand what I meant and just said
    "everone was on holiday".

    I asked for the assistant chief MO, or, failing that, any MO on the outpatient ground
    floor, but the dummy extended me to her ward, where I was kept waiting like a fool
    without anyone answering. This went on, with me making at least half a dozen calls
    without results. Typical of government hospitals.

    I even tried the ambulance extension, hoping to speak to the MO there. NOBODY
    answered.

    Finally I asked for the sister on call, where a conscientious Sister Goh answered
    me with professionalism. I described the situation, and said that if I made a complaint
    to the Health Ministry that their entire hospital had no mucus suction pump, a simple
    device available at any private clinic, and that nobody answered their ambulance line,
    the hospital would be in serious trouble.

    She said she would go up to her ward and attend to Pei Lee straight away, and would
    call me back.

    I received a call from her at about 7 pm, when I was in Pudu about to take my dinner.
    She said that Pei Lee was in very critical condition, and apologized for not calling earlier
    due to her busy schedule. She advised me to call her father to come down immediately,
    as he was not around earlier when she went up. She said there was a doctor, some
    specialist, attending to her with the suction pump then.

    I called Pei Lee's hp, carried by her father, but received no answer. Calling her house,
    her younger brother answered. Told him her sister's condition and asked him to go
    down straight away.

    I texted Syahidah Isyak, one of the other three women above with this disease, and
    requested her to relay it to Yvonne Foong, who is in the US for surgery as well as
    Keisha Petrus. It turned out that Keisha is also in the US too.

    I then drove over to Klang GH, having to ask for directions along the way as I haven't
    been there since 1988, when I took my late mum there to see a reputatable chest
    physician for her asthma.

    Reaching there about 9.30 pm, I went up to Ward 7B, a women's ward. Entering
    it was like going into some 19th century ward packed with patients infected with
    the plague. Many of the young interns and nurses wore masks. I was wondering
    whether I might catch some serous viral or bacterial infection there.

    Asking the reception nurses for Pei Lee, I was told that she had passed away at 6.30 pm.

    Syahidah Isyak relayed the news to Yvonne and other friends, who reacted with shock.

    Thank you again for your most kind generosity, Mr Chong. I guess this would go some
    way into helping her father cope with the coming expenses.

    My boss had also texted me earlier at 2.40 pm, saying that he had banked in RM 500
    into her account and wishing her well.

  15. #15
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    It is very sad to know that Pei Lee passed away. I read her blog, it has not been easy for her and her family, it is very sad indeed.

    My heartfelt condolences to the family, may her soul rest in peace.

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