跨國求藥全紀錄！罕病媽跨國求藥的愛與覺察｜生病藥錢 S2 EP6

當生命迎來預料之外的考驗，照顧者該如何帶著愛與勇氣前行？本集《生病藥錢》邀請到遠從高雄而來的蘇打餅媽媽。她的孩子確診了全台首例、全球僅 20 例左右的「早發性癲癇腦病變第五十三型」。從一開始的不知所措、歷經罕見疾病跨國求藥的艱辛，到學會與自己的疲憊和解。這不只是一段求藥的故事，更是一份送給所有特殊兒家庭的溫暖支持指南。

本集重點：
📌從不解到確診  面對兒童癲癇症狀與自費基因檢查
📌跨國求藥的考驗  理解「個人自用藥品專案進口」流程
📌善用社會資源  遠地就醫住宿與病友社群的溫暖後盾
📌照顧者壓力緩解  愛與疲憊是可以並存的

《生病藥錢》是專為病人與照顧者打造的健康理財 Podcast。結合健康、理財與法律，帶領聽眾拆解生病後會遇到的真實問題，用深入淺出的方式幫助聽眾理解每一個病後選擇的關鍵。

Apple Podcast🔗https://podcasts.apple.com/us/podcast/id1880030312
Spotify🔗https://open.spotify.com/show/1upERRmhA3oM6wEDS12NPf
YouTube🔗https://www.youtube.com/@pills_n_bills
KKBOX🔗https://podcast.kkbox.com/tw/channel/Kru2PqzmMEPTttetQZ
Instagram🔗https://www.instagram.com/pills__n__bills/

Transcript

Copy Transcript Copied

SPEAKER_02 3:34

So it has so tin tausing tension t meal down chin har and beats meal down hand shall.

SPEAKER_01 3:40

Do it.

SPEAKER_02 3:40

No diet to transit your earthly so you can do it. Now how moon tin isn't just a mo chin or ma yeah mil banfa eat it. Just it's in the can't change the zenzuang or major sit gasome young. Ya.

SPEAKER_01 4:16

Sweet high fab in the cita fab in the chanjon cattle sits on young.

SPEAKER_02 4:21

How just or my moon sita hajos di ancient. Do it. No, she had a zen zon tension ten song, your hand does on your so horses need a fat die. Just na jal sis and do need you have fat die dance had just in what two changes on just so it's a tell, it's a tell it's tell now how yell so your single so she's doing now how yeah, how not just eat ah you how shall she without teacher fat to say can she doubt con tea. Do you like so just two and the food dance or she the full dang that? O mea can high or the shantong the zen zong. That's dang food, just you'll put the high teaching sang. Just yao dun chin the trip to the organs high seating sang, mayo pan path one team. Now hold the shark or may I cut the cheese, rose gentle uven song, you know, easy and eat with young ya. Pansial song teach and hasn't tin just. Now we don't pabajo.

SPEAKER_00 6:25

No, go to easy and you can see the tin.

SPEAKER_02 6:29

Shenzhen motion just con high comments or man city that to ease gun tin is be jal puts things joking high yacht. Just uh hot team shall normal to see ya do have the sentient dos each food. Do I look hung and go to jail Juan her the yacht no joy the yarn hot?

SPEAKER_01 6:51

Chisens hold the child and the chisels whole and sit some young side in songs can't die.

SPEAKER_02 7:00

The Macan it is uh the ambience all high me or cause high me or chasing easy comes in each. Norman the Ambient Jar Tin Jacks Hu Jan Tai Supposin Lapienta, Supposing Nabienta. So now Jose can't doubt this say. No pin not so bows and has all the soul eager shall in the dance run random pin pin the top the soul song. So it isn't just a change or your young nay quite yao like so children so you but young young meal number. So it is sinagin now, do it like so. How can I see young shiny quite pimping the move and sound fun uh you have junk eat zangdi? How many of junk did have inka junkie the zangin have to bad jungle? So it happens and boet her night's fun. Do I championship? Do ya so ya? Do I eat just gone so equan? Just tongue the ya. So a young tea doubt straight body meant. No in guy out snake a yaw ja just kind of yawa, yao pos it like a foundan ma, just wait as well as the answer and yao tenth. Yao the foundances or in your in guy out for young straight. Gai fang song the jo fang song guy zen sound the jo sen time.

SPEAKER_01 11:36

What's a matana double shit in Dou Sh.

SPEAKER_02 11:38

And look a mama how learns I eat the necko now Tama e Daddy and see her father. Tan e Daddy Chi is quantity. Now has a total diet, total high guy. Now she's a way bowers more e young the yao, it's a young sweet and tin chi mode. Now you're and so in her joy on the tea on cheese boo young. I can you're an ear and so you have to sweaty how she saw 'cause it's a way puts it out, doubt you need some or the champion.

SPEAKER_01 12:16

Not to sweet in your gaze and toll and join young type.

SPEAKER_02 12:22

Yo, tis the easy woman, just so a hat is the case or your ego and zinc called the booth. So Joe Ya quite young ones, how Josh sent in the Jin isn't bound or sentin John and Jinko. Not the whole or Joe Win easy and so sentin' John Jinko, who has easy bound two. So isn't also two out may buy and two dia. So it doesn't dig face and can you doubt how certain I suppose even bound to how you know what the each power share the other. No what power on the old tens whole joy is sensual, no supposed walk power on the old turns home, some food bounds with a yacht. Do you have your pools go white the yachtang or position of dialogue and not so easy and hold on is some shall car dance them for my to re whole like power powder, or the diamonds want to pandemic. And you teach the go and so I mean almost the outsource. So it's G B and eating sent in the her fat young yao jin call the Gen Cagon can hydro sequence ya.

SPEAKER_00 15:40

So just tramp the loo doing young yacht. So it has your toss.

SPEAKER_02 16:42

So how I will job out the share leader or just all the position tray. Now your one or just bang, I already were to the and she will. No, or Jo Jaru Fit the third one, Jaru Tension, the third one. Now how about the send John Pose? Now you eat a chimpe, mamma like about Jadin tree light and negative. So just a two holder doubt that she had the shin why. No, two dot the bounces or beyond women. So, I'm not sure.

SPEAKER_01 20:27

Now what's the duny say shall he understand? That's the other cock water yacht and manchang. Not to go catch out yet, that you could go shall need that to go to shit, you nice quanti and heal bang too. Hos it Yonai Silyan How dances at White.

SPEAKER_02 21:07

Now go as all does so many bottom young. No, no, I saw just a yard sound. Just yeah, Taiwood is why hell yeah, no but how goes the poison trade is how you want your bow to go teach on the trade in the GP means and so and has a do it. Now you're gonna go continue to the so that being the drunk. No ya de Ru Down for the Hantin T Pinow said Turnfu gonga no bite dog handy pin mean. Take a baby eight in tree. No meyo chico won't go east and has only just e d Jose ninja puts a hand T Pniow. Has only eight in tree, not to buy part of the channel just a chant won't tea. Do I high push outsu say quite those putsu they buy? Isn't she on the man's bile? Almost is yeah, can't go manto easen. But dancing is how the cheap in hot I go tea sounds like almost dead had the hand cheap in the pen how handing cheap in the means and do you source in the doubt. No, we a male so send the yacht mean has the what is this young so send her hold the happy sauce or doubt the sheer sent it the tongue cool, just the young hack is so full for the hold the answer. So what can do a sense to be can dump but I just want so just so on my tent those ideas or can I maintain a chocolate? No outside. No teases upon her she and just Babato Baushan is a face on the mean right. Just a tart and high meet two cents or how to go up on how much about inway so that being in her twos or teeth on the big cut ego. No Balchan gone comments so only treat them, the send you name. Not so it beans also treat and treats and ham pin. No, so it's whole like women see beans and sit bow say quite bow and sit the out your one tension.

SPEAKER_01 26:48

So eat I grew hard at the friend see or two, that's it.

SPEAKER_02 27:42

Now how human is your bamfa, do my guns in cuna, two in the social than ya or two than a shall shall the gym bow founding me and how shiny fate the yaw can have cow. Now how many din yao, yao bang ta quite ya who fade the gentleman. So do woman that so does it be two like the kai shall. Now chance to had a gin jin time. So yes, it's swashachi.

SPEAKER_01 28:26

So even your tea doubt in church woman as only a song trace the sheeping title fen shain is being yo the jazz, nihil the conkai fen shawn to bang too without the city, who shan't bang too without do.

SPEAKER_02 28:46

Cheese or jury and dog bound to see shad this or she shouldn't your tongue. So oh, you're nice. Now talk good not in to each down go to the fence and fast who were male to small Taiwan Guehua, I'm gonna judge him but you may have fun pay on the salt. No walk is male chin has some title or whatever, just bomb just so the salt root or quantity has yet faded out, how to feather gent. No son shadow had a one. Just a sort of means her one, the fair. No, just dang the either teaching your ego, just han you and henguan, just as uh so and harder some mean just your sienta. No joke, the quiet gun pay, but now how you so ah, you know I dang the night see a man how one man your tree the unit like a city is the Natoko.

SPEAKER_01 30:30

I wish you want so oh I can't say that I say those Jansen Janglots I your eyes, Jardin's and lights went down in swinging mist song.

SPEAKER_02 30:42

Tis the e case taking treatment as all tis a man bake one day woman can't how to guns well. I need some two or shin down jail, I just wasn't pin the answer.

SPEAKER_01 31:27

Isn't too long jump and bow so you were pinnota cheapin. Isn't also need in the whole n that's a tree hot colour as a barnian. Not also email your child gonzoma. Not that chin chia, so she took some new mil and she won't get sang with a suit, being a default.

SPEAKER_02 32:31

Now how you bound the curse pike. No rule is about di class like she is mobile by chin. No doubt that class is easy, my face in the city. Now Bakwa decker face decor face is out to fool. No, in the whole cheese yes, be my data caibo deck curve face in a di chin jata quite cheese or my whole curveful like or just genium bat baby easen, how just a paizai or the curb is just out of the city. Now how your so can also chin eating source the diakes like Baman Daiko. Now type of bamba chin, how tai had a type. So may I can pause a divine pin or chin to mention, Titan on Zong Young has the easy and case. That's a time how to find. So it's on yao. Not dear go to the swan, beyond it's a shawk and send the shall have to be shall. Now see, beat up bonkwin. Just shall how need the chin sang to it. Not his beach, you don't fancy nipa shall pen sunk beach. Now the do it. Now how far to so eat in, so it's the how it didn't. The doors in disanko ni hen to shall have me or tho ni clean e ta so yeah which the hun lay. Then says in put on to your seos, papa mama, was it to y'all talk, human so it's a the joss it's a girl. What's a whole shall pin on her fan, zan fat or her fans, young sput fan cool now her fan, was so book or eye ta notes seen when shall be the tell some sentence tie day tie day. So nicin' the chi just or a can and shall do kai, or canon, just chinchy buha ya bon quay, or just some type of only job either shall pen. So it just on just a bia eager and in turn bia it's a country, never but it intatto or maybe hunger sin talk to the champagne.

SPEAKER_01 37:18

So it is the champagne balance that she's on shudabi mama, like GMO come fenchant, so that in the cool shea young tin double says, can you go down? She wants to go gym the fencha, like pay banker way, it's she bunker with our chance of ho dang she wants some food, that ten dollars each ho, no go tells you like this giant chink hole, young little chancellor. She wants that woman to do the goodie fans and sat your can do why you're gonna be able to do that.