SATIRA: Time for our first break but up next, the public charity foundation that was set up by a Neurofibromatosis patient to assist other NF patients. We shall welcome this very special girl, on set. SATIRA: Hey guys you’re still watching The Breakfast Show with myself Satira and Naz. (NAZ: Hello) As we mentioned earlier that we will be interviewing a very special girl (NAZ: Mmhm) who’s an inspiration to many. Her fighting spirit, her strength that she encompasses should be a role model to everyone.
NAZ: Absolutely. Of course we speak about the debilitating condition called Neurofibromatosis we’ll speak more what this
condition in which uh… well many patients here in Malaysia do not have enough access to the right treatment (SATIRA: Correct) I mean there’s treatment but the right treatment in order to improve mortality rates. It could be a
potentially fatal disease if not treated and the treatment my goodness and there’s so much care to be put into the
care of patients.
SATIRA: A lot of patience required Ladies and gentleman we’d like to welcome on set Yvonne Foong and also her friend the ever faithful friend Mr Elliot on set. Good morning.
ELLIOT: Good morning SATIRA: Hello
NAZ: Good morning, welcome to The
Breakfast Show. NAZ: Ah. (SATIRA: Ok) There you go. NAZ: That’s…of course Elliot typing out simple sentences so that Yvonne can pick up what we’re saying simply because the Neurofibrosis…fibromatosis condition affects her hearing as well. NAZ: So tell us about this condition: Neurofibromatosis. YVONNE: What is Neurofibromatosis? Well NF is a genetic disorder. It is a condition that causes tumors to grow in the patient’s nervous system. Brain, along the spinal cord and peripheral nerves. So these tumours are benign, and they grow slowly but impede the affected nerves.
NAZ: Mmhmm, so when the tumours grow they pinch the nerves ya?
YVONNE: So there’s…no cure SATIRA: No cure. YVONNE: And so there is no cure so what we can do is that we have to remove the tumours timely, like monitor the condition SATIRA: Ok YVONNE: As long as we monitor the condition well treat the tumours timely before they cause irresistible damages NAZ: Mmhmm Yvonne: Irresis… Sorry, irrese…irreversible damage.
SATIRA: Irreversible. Ok.
Yvonne: Then the patients can live long lives despite so many tumours growing in the body. NAZ: Mmhmm. Mmhmm. SATIRA: Now ladies and gentlemen, Yvonne has been going…half gone through thirteen surgeries NAZ: Thirteen surgeries to remove all the tumours that grow, I mean the tumours are benign as spoken by Yvonne, ya but what happens is it grows and impedes your nervous system SATIRA: Right
NAZ: And that’s where other complications may occur If i may ask, there are two types of Neurofibromatosis
ELLIOT: Yup, yup. NAZ: Umm Type-1 and Type-2 Could you ask Yvonne to tell us a little about the…
SATIRA: Tell us about the different types. NAZ: Yeah
ELLIOT: DIfferent types…*typing* NAZ: And so its so fortunate that we have Elliot over here
SATIRA: I know. He’s amazing. YVONNE: The two types of Neurofibromatosis? Ok.
NAZ: Yep. YVONNE: NF1 is milder. (NAZ: Milder) NF1 causes tumours to grow mainly along our peripheral nerves NAZ: On the skin, right?
YVONNE: And also NF1 patients also have brain and spine tumours but lesser compared to NF2.
NAZ: Mmhmm, ok. YVONNE: On the other hand NF2 is the one that I have. NF2 patients grow tumours mainly in the brain and spine, and less on the peripheral nerves NAZ: So more brain and spine, yeah? Ok. YVONNE: So NF2 patients became…become deaf NAZ: Become deaf
YVONNE: I’m deaf *laughs* NAZ: Ahh.
YVONNE: I can speak because I learned to speak long before I lost my hearing NAZ: I see, I see
SATIRA: Ok. Alright. YVONNE: And then we also have a lot of spine tumors. Spine surgery.
NAZ: Mmhmm. Mmhmm. NAZ: So thirteen… thirteen surgeries. How do you manage to maintain your quality of life? This is the second question actually. Yeah, there you are. YVONNE: Ahh… When I was diagnosed at first I was treated at the Kuala Lumpur General Hospital so at the hospital it was the General Ward.
N&S: Mmhmm, yes. YVONNE: So I stayed with a lot of brain tumour patients (SATIRA: Right) and I got to observe the…
NAZ: Mmhmm? YVONNE: Future of brain tumour patients in Malaysia. And then… I had my first two surgeries in KLGH
NAZ: Mmhmm YVONNE: And then my third surgery could not be done here, because my brain tumour could not be removed entirely so an American doctor…knew about my case came across me So he offered to remove the rest of the tumour entirely for free in America NAZ: Wow.
SATIRA: That’s amazing. YVONNE: So when I was nineteen I was taken to America to have that tumour removed and that experience… I experienced what it was like… The… future for NF patients are there
NAZ: Mmhmm We can live long lives (NAZ: Long lives). OUr quality of life is maintained And so… after that… After that I needed other surgeries as well
N&S: Mmhmm, yep. YVONNE: And then I was determined to go back there because I want to continue living to live a purposeful life And then I didn’t want to deteriorate I didn’t want to deteriorate like the people that I saw
SATIRA: RIght, right YVONNE: So I went and started a fundraising campaign SATIRA: Practical right?
YVONNE: And I sold T-shirts, wrote a book.. SATIRA: I actually have her T-shirt *laughs*
YVONNE: …give motivational talks and then throughout the past… six, seven years I managed to have a total of maybe… another ten or so surgeries in America (S&N: Mmhmm). And that’s why even after thirteen neurosurgeries, I’m still so healthy.. NAZ: Excellent
YVONNE: ..am able to live an active life
NAZ: Its the in domitable spirit of this young lady SATIRA: I know!
NAZ: You just can’t help but admire her. The..the will to continue wanting to live y’know and not just live, live as fruitful a life as possible. (SATIRA: That’s right). So hence…Yvonne actually set up the foundation which you’ve spoken about
before, right? (SATIRA: Correct) Its the uh Celebration of Life’s foundation, specific…specifically for Neurofibromatosis patients
SATIRA: And to…yeah. NAZ: So um what’s the motivation of course? Tell us
about the foundation YVONNE: Yes that’s right Well, throughout my fundraising campaign the past six years whenever I go out there to raise funds, to give talks and all… many people with the same condition or with different life challenges came to me for moral support to share their stories with me one-to-one.
SATIRA: Yes YVONNE: And its through these experiences I discovered that Malaysia has a lot of other patients with NF
NAZ: Mmhmm YVONNE: And their are manifestations could be far worse than mine
with the rumor YVONNE: They have sent me photographs…of them having bumps all over their body (NAZ: The tumours on the skin yeah) and the… disfigurement, and they don’t know where to go where to turn to for help
SATIRA: Yep YVONNE: And some patients have brain tumours or spine…(NAZ: Tumours?) poor management from near paralyzed
S&N: Mmm Yvonne: So… and many of them have asked me how to get help
SATIRA: Yep YVONNE: And I’ve tried to assist them, some of them
N&S: Mmhmm YVONNE: over the years
SATIRA: Yeah YVONNE: And as I meet more Malaysians with this condition and I realized that very few of them are able to do what I do, able to raise funds able to have surgery. In fact going abroad for surgery might sound like… might sound like a good, umm… might sound like something that everyone wants…
NAZ: To do, yeah? YVONNE: But when it comes to really going abroad for surgery not many people are ehh… NAZ: Fortunate
YVONNE: …would want to do that SATIRA: Yes that’s right.
NAZ: Mmhmm, mmhmm. I understand, I understand YVONNE: So I want to be able to help them acquire proper medical treatments
NAZ: Mmhmm SATIRA: That’s sweet. That’s amazing. YVONNE: Because I empathize with them
SATIRA: Yes that’s right YVONNE: I understand their helplessness
SATIRA: That’s right NAZ: And of course we admire your efforts SATIRA: I know it amazing
NAZ: to of course uh help other patients in Malaysia suffering from Neurofibromatosis or NF, ya? SATIRA: NF. Now ladies and gentlemen also, Yvonne has been diagnosed with NF since the age of sixteen. That was in 2002 and all surgeries that she had, she’s done her own fundraising
NAZ: Exactly SATIRA: Its amazing y’know I interviewed Yvonne four years…four, five years back I know she had just started her Heart2Heart campaign and she was raising a lot of money on her own and now all she wants to do is to basically
help other patients like herself because a lot of Malaysian patients who…Malaysians who suffer from NF… choose to believe in fate rather than, y’know the ability to actually…y’know NAZ: Well it is a natural…reaction to “Oh, this is fate (SATIRA: Yeah), I’ve accepted my fate I’m just gonna live life”
SATIRA: Correct NAZ: But yes, there’s…there’s also the indomitable fighting spirit (SATIRA: Correct). The human spirit SATIRA: And also the awareness (NAZ: Yeah) that, y’know there is still a possibility of having a good life.
NAZ: Exactly, so of course, the target of the Celebration of Life foundation is N&S: ..one million pledges
NAZ: So, Elliot (SATIRA: One million pledges). One million pledges. So how many pledges so far?
ELLIOT: One million ringgit
SATIRA: Oh One Million ringgit pledges?
SATIRA: Ok So do we have the statistics?
ELLIOT: Alright NAZ: So far well, if you…if you care to share it with us of course YVONNE: Mmmm… Right now I have received like RM6,000
NAZ: Mmm. Already? YVONNE: And there are some more coming as well.
NAZ: Mmmm. Very good, very good. NAZ: So of course things are happening and of course
for Malaysians out there who want to continue helping out those who
suffer from Neurofibromatosis or NF because…these people deserve a chance to live as complete a life as possible. Do surf the website of Yvonne Foong: www.yvonnefoong.com www.yvonnefoong.com. Weve got it on air…on the screens right now SATIRA: That’s right
NAZ: So surf the website take a look at how you can do your bit to help NF patients in Malaysia
SATIRA: Especially to corporations as well. If, y’know this is a great service that you can… basically you know help those in need, you can have your banners advertised on Yvonne’s website. Yvonne has a strong following
NAZ: Absolutely, absolutely but let me ask what will the funds…be used for? If it’s possible
YVONNE: Hmm? The foundation aims to subsidize the cost of surgeries for patients by 70% (NAZ: 70%). Let’s say… and then patients have…can apply for this assistance every six months SATIRA: Okay YVONNE: Because well, the six months will allow them to recover from their previous surgery S&N: Mmhmm YVONNE: And why 70% is because that when we help them to pay for the cost of surgery by 70%, the other 30% will allow them to exercise their independance
SATIRA: Okay YVONNE: They can plan on how to fund the 30% themselves
NAZ: Mmm NAZ: So you don’t believe in just umm…okay, we give you the money and then you go and fix yourself. She actually…a part of the programme is she encourages NF patients to actually stand up and go: ‘Take the initiative, there’s 30% more to go, you can do it. If I can do it you can do it as well (SATIRA: That’s right) So its…its not just the foundation, its the infectious spirit that she has
SATIRA: That fighting spirit. That’s amazing. NAZ: Elliot, so maybe just to wrap things up how did you meet Yvonne and um… and what made you become a faithful friend? ELLIOT: Well uh…I met her at church essentially. (NAZ: Mmm) We go to the same church and it was just a need that I saw…that need to helped and y’know wasn’t just me, it was a group of us who actually stand out and actually help her out
NAZ: Mmm ELLIOT: So whenever she has a need she will actually give us a call NAZ: God bless your soul, that’s for sure.
ELLIOT: We are available to her at all times NAZ: All times. Including Boxing Day
SATIRA: I know!
ELLIOT: Including Boxing Day. Waking up at 5:30am *laughs* NAZ: Excellent, excellent. So that’s all the time we have to speak about Neurofibromatosis and thank you so much to Yvonne for coming out and high-lighting…this debilitating disease and hopefully through her efforts more Malaysias suffering from NF will be having access to the right kind of medication.
SATIRA: Right kind of medication. Also to create awareness among all other Malaysians, regards to this disease.
NAZ: Once again Yvonne, thank you so much I need to shake your hand. (SATIRA: *laughs*) Merry Christmas. Merry Christmas Elliot as well. Thank you for showing us what its like y’know, to really indulge in the spirit of giving as well. So hopefully for Malaysians out there. Once again, the website to surf is www.yvonnefong.com and make your contributions today SATIRA: We have to take a quick break, but this is what’s coming up next in The Breakfast Show