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 is 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. The 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 occasionally, but have not kept in touch for the past year.


Reading Yvonne's pages two days ago, I found out that 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/2012/10/08/pei-...t-and-recovery/

http://www.yvonnefoong.com/2012/10/04/pei-...sly-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 is 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".

Apparently she was supposed to have been operated on last year by a surgeon at UMMC
when she was still walking and in fair condition, but it appeared he was too busy and
then went over to the US for a month or so for some course. Whatever the reason was,
the surgery was never done there, and she deteriorated not too long after that, losing
the use of her legs.

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.

sharing is caring..may she get better soon..

Pei Lee passed away at 6.30 pm on 15 November 2012.

Rest in Peace Pei Lee..