Just to ruin your day...

[Trefellin]

http://www.dailymail.co.uk/health/article-1232383/Family-make-day-Christmas-pray-daughter-rare-condition-survive-December-25th.html

For Rachael and Leigh Badman, there is only one wish on their Christmas list this year - that their terminally ill daughter survives until December 25.

Fifteen-year-old Paige suffers from a rare brain condition which affects as few as 12 people in the world, and could kill her any day without warning.

And her condition has deteriorated so much in recent months that her parents filled the family home with Christmas decorations on November 1 so she can enjoy the run up to her favourite day of the year.

Since then, she has regularly opened wrapped presents and received visitors - but sleeps for up to 19 hours a day, her parents knowing that each time she closes her eyes, she may never wake up.

Paige suffers from Pitt Hopkins syndrome, a genetic condition which causes the brain to shrink and leads to severe breathing difficulties.

It is thought there have only been 12 confirmed cases worldwide, although there may be more who suffer but have not been diagnosed.

The disorder is so rare that research into treatment is limited, and Paige was only officially diagnosed with the condition four years ago.

Since then, her condition has dramatically deteriorated.

Mrs Badman described dealing with the condition as 'like being on death row' as she never knows if she will wake up and still have a daughter.

The 33-year-old from Knowle, Bristol, said: 'When people ask if we are looking forward to Christmas we say we are. But we are always thinking: "Is she going to be here?"

'Our best Christmas present ever would be having Paige at home with us on Christmas.

'Despite everything she goes through, she is always happy.'

She added: 'We've put presents under the tree and unwrap them for her. She's been very spoilt this last month but she's so brave we want to do everything we can to make her last Christmas as enjoyable as possible.

'She always loved Christmas and it's heartbreaking to see her suffering like this.

'Doctors say she will just fall asleep one day and not wake up, and I almost hope it might happen soon just to end the suffering.

'But until then, we're treating every day as though it's her last and celebrating Christmas with her, which was always her favourite day of the year.'

Paige is unable to eat, has never walked or spoken and suffers from epilepsy, which doctors warn could kill her at any time.

But she loves music, and enjoys watching the DVD of the musical Mamma Mia!, and in May, went on holiday to Florida with her parents and little brother, Kefton, who is eight, where she enjoyed a specially arranged Christmas dinner.

The family, who have already organised parts of Paige's funeral, also saw the teenager swimming with dolphins during the trip, which was arranged by the Make a Wish foundation.

Since then however, her condition has steadily worsened.

Mrs Badman, who is separated from her husband and works as Paige's full-time carer, said yesterday: 'She has totally deteriorated over the last few months.

'She can't eat or drink anymore, and her brain is shrinking. Her muscles are gone in her throat - she could choke on her saliva in her sleep.

'The doctors said her brain is like a 70-year-old's. She also has MRSA.

'With all her problems, we just thought: "Let's get the Christmas tree up as soon as possible". We're praying she lives to see Christmas day.

'She loved her food. But now it is pumped into her stomach - she has milk in the day and water at night.

'She can't eat Christmas dinner this year. We all feel guilty eating around her. She loves the smells from the kitchen.'

Mr Badman, 33, who works as a carer for disabled children, added: 'She loves the lights. She just stares at them for hours. Apart from that she sleeps a lot, and loves watching Mamma Mia! over and over again.'


Aww, horrible.

[Takumi Fujiwara]

That's pretty sad, but that's how life is sometimes, sometimes you draw the short stick.

I would say "this should make everyone thankful for the life they have", but that sounds like something out of an after school special.

[Leader Desslock]

Am I the only one who noticed that the child "has never walked or spoken" and wondered how the parents know "'She always loved Christmas... which was always her favourite day of the year."

[Trefellin]

Am I the only one who noticed that the child "has never walked or spoken" and wondered how the parents know "'She always loved Christmas... which was always her favourite day of the year."

They know that she loves Christmas because she is a child and not one of these guys...

http://i157.photobucket.com/albums/t51/richiefoulds/Scrooge.jpghttp://i843.photobucket.com/albums/zz352/MisterGrinch_2009/grinch.png

[Black Cat]

maybe she communicates with them by writing

[CrossboneGundam]

Am I the only one who noticed that the child "has never walked or spoken" and wondered how the parents know "'She always loved Christmas... which was always her favourite day of the year."

This. Veggies can't write, either, Black Cat.

[Aragami]

THey probably noticed how enthusiastic or happy she seemed on Christmas...

Yeah, why does news have to be made drama, and why does drama have to twist the heart? Make it as ironic and painfully sad as possible.

[Old Ape Face]

THey probably noticed how enthusiastic or happy she seemed on Christmas...

Yeah, why does news have to be made drama, and why does drama have to twist the heart? Make it as ironic and painfully sad as possible.

becuase Drama sells, people are addicted to chaos.

[tenshi_a]

Wow, what a weird life to live. It's Christmas every day from Nov 1st until your dying daughter stops breathing.

The poor kid barely aware of anything, rewatching a musical DVD, opening gifts she cannot comprehend enough to appreciate, and taunted with the scent of delicious daily Christmas Dinners which she cannot eat.

It's so bizarre, and twisted, and full of despair and false joy.

I find myself remembering a short (free) visual novel I read, called Narcissu (http://narcissu.insani.org/), about two terminally ill teenagers... they begin the story living in the hospital is cold and impersonal, but it feels better than the other option, which is to go home... because everyone is continually full of sadness and actively trying to make them happy in some false way.

[Soluzar]

That pretty much captures what I was thinking, but was unable to fully express, actually.

[Arnold]

I'm a bit confused as to how she can't walk and yet she swam with dolphins.

Regardless, though, it must be a terrible situation for the parents to be in. Here's hoping that she at least lives until christmas.

[Jatz]

I feel nothing over this.

[Jabberwock]

It's a grief defence mechanism for those who have to witness the deterioration of a loved one as much as it might be for the sake of the girl.

Dramatic stories exist because of just that--they're dramatic. Though much of you will not feel anything for this young girl (which is absolutely necessary to go on with our daily lives), it can't be said that the family has not done what most in their circumstance would do themselves in some manner.

It's a fun story all the same. Thanks for sharing, Tref. A personal fluff piece like this makes for a good break from all the world politics news in here. :)

[Leader Desslock]

I'm a bit confused as to how she can't walk and yet she swam with dolphins.
Onlookers who weren't directly related to the family probably would've described the event as 'floating unresponsively next to dolphins in a safety jacket while her head was supported by her parents'.

Parents like these tend to interpret their child's random twitches in whatever fashion they find comforting. Remember how Terri Schiavo's parents said that their daughter had unequivocally communicated to them that she wanted to live, despite the fact that she'd shown no evidence of higher brain activity in years?

Wishful thinking isn't just for tiny tots sitting on Santa's lap, it seems.

[Bernard_Monsha]

Parents like these tend to interpret their child's random twitches in whatever fashion they find comforting. Remember how Terri Schiavo's parents said that their daughter had unequivocally communicated to them that she wanted to live, despite the fact that she'd shown no evidence of higher brain activity in years?

Wishful thinking isn't just for tiny tots sitting on Santa's lap, it seems.

Interesting you should bring that up (http://www.guardian.co.uk/world/2009/nov/23/man-trapped-coma-23-years). There may be a high number of misdiagnoses going on.

[DavenIII]

Interesting you should bring that up (http://www.guardian.co.uk/world/2009/nov/23/man-trapped-coma-23-years). There may be a high number of misdiagnoses going on.

you guys ever watch House? every case is misdiagnosed at least 4 times before anything is fixed, and he's supposed to be the best diagnostic in the world or something...

the only sure bet is that it's not Lupus...because it's never Lupus.

[Leader Desslock]

Interesting you should bring that up (http://www.guardian.co.uk/world/2009/nov/23/man-trapped-coma-23-years). There may be a high number of misdiagnoses going on.
Not in Schiavo's case. CAT scans revealed profound brain atrophy and that her head was essentially filled with fluid. EEGs registered no brain activity whatsoever.

[Haro!]

Interesting you should bring that up (http://www.guardian.co.uk/world/2009/nov/23/man-trapped-coma-23-years). There may be a high number of misdiagnoses going on.

I'm a bit late to the party but, that case is debatable. Since the person is using Facilitated Communication to "communicate" while in that state, and the validity of FC is still controversial.

[Nakey]

hey Treff, has she died yet?

[Shiroiyuki]

Onlookers who weren't directly related to the family probably would've described the event as 'floating unresponsively next to dolphins in a safety jacket while her head was supported by her parents'.

Parents like these tend to interpret their child's random twitches in whatever fashion they find comforting. Remember how Terri Schiavo's parents said that their daughter had unequivocally communicated to them that she wanted to live, despite the fact that she'd shown no evidence of higher brain activity in years?

Wishful thinking isn't just for tiny tots sitting on Santa's lap, it seems.

I wonder if you'd be the same bitter old bastard if your child/loved one was the same way or going through the same ordeal. Probably not.



Honestly, I feel sorry for the girl as she probably doesn't even realize she's dying, outside of whatever pain she must endure.

People who don't understand what it's like to watch someone they love get worse and worse (and eventually not know who you are) can't begin to imagine what it feels like, so I don't blame you all for making jokes. But it is never wrong to keep hope alive, even if for your own good more than anything.

[Leader Desslock]

I wonder if you'd be the same bitter old bastard if your child/loved one was the same way or going through the same ordeal. Probably not.
You mean, like if my father had been in a persistent vegetative state? And if I'd been part of the decision to terminate life support? And if I'd, let's say, held his hand for the entire time it took for his artificially sustained vitals to eventually fail?

I have every reason to suspect that I would say the same thing, dear. Just a hunch.

People who don't understand what it's like to watch someone they love get worse and worse (and eventually not know who you are) can't begin to imagine what it feels like, so I don't blame you all for making jokes.
I'm pretty sure I don't have to imagine that, actually. Jokes are what have always gotten my family through those times.

[Soluzar]

I wonder if you'd be the same bitter old bastard if your child/loved one was the same way or going through the same ordeal. Probably not.
Some people just don't have the knack of self-deception. I know that I always see these things clearly, even if I don't want to. It can be a bit upsetting, especially when everyone around you is trying really hard to maintain optimism that you absolutely know has no rational basis.

[Trefellin]

I'm sure people cope in different ways. Some might look desperately for any little bit of hope, some might protect themselves by shutting down emotionally and others might take refuge in humour.

[Shiroiyuki]

I have every reason to suspect that I would say the same thing, dear. Just a hunch.

If you did say the same thing, that makes me rather sad.


I'm pretty sure I don't have to imagine that, actually. Jokes are what have always gotten my family through those times.

There's a difference between a good natured joke and pure cruelity.

[Leader Desslock]

If you did say the same thing, that makes me rather sad... There's a difference between a good natured joke and pure cruelity.
You know, I just looked back at my earlier posts in this thread. Could you refresh my memory as to what the joke I made was? I didn't make one that I'm aware of. The dolphin remark wasn't a joke - that's probably how onlookers would have objectively described the scene.

I have all the sympathy in the world for the girl and the family, and rational hope can be a powerful and positive thing. The sad thing I see in this whole story is the false hope. That's all I'm talking about - the propensity for people who are a bit too close to the scene to realize that they're projecting actions and motives onto their loved ones that they want to see, rather than seeing the actions and motives that are there.

[Shiroiyuki]

Fine, whatever; it doesn't even concern me how you react to a sorry situation like this.

I just know for me personally, having been through a similar experience with my mother (which was DREADFUL, and I wish it on no one else) -- I never ever would have lacked so much tact as to sit there and berate someone else's hope.

If they want to wish and pray for a miracle, read too much into something for their own sanity -- like the dolphin thing, or the fact that Christmas is the girl's favorite holiday -- damnit, who are you to say they are wrong? Let them hope.

[Aragami]

I have all the sympathy in the world for the girl and the family, and rational hope can be a powerful and positive thing. The sad thing I see in this whole story is the false hope. That's all I'm talking about - the propensity for people who are a bit too close to the scene to realize that they're projecting actions and motives onto their loved ones that they want to see, rather than seeing the actions and motives that are there.

Also, you aren't there. Maybe she makes fairly lucid gesticulations and expressions.

Science doesn't always have the last word. If a scientist told you your daughter didn't know what she was doing or thinking, would you ignore and disregard what she was saying and doing, if a bit muddled?

I mean I can imagine a pair of parents hauling around a child's skeleton and being like, "I think she's hungry". but that's not what's happening. We just have this little window.

[tenshi_a]

Parts of this thread remind me of an interview I once heard on the radio with John Suchet (who I think of as "Poirot's brother"), about his experiences caring for his wife who has Alzheimer's.

To summarise, she has changed so much as a person, it's like she's a shell that looks like his wife, but she's long gone. He said she's like a mirror for him - if he's happy, she's happy. If he's angry, she's angry. She doesn't really understand anymore. She hates the things they used to love together too, like Beethoven's music. He tries to be endlessly optimistic in order to keep her happy.

He was championing a charity who have helped him cope with being her carer. "Admiral Nurses" (I had to look that up).

He said that talking through his experiences and feelings with them has been a great help, because they realise what people go through when a loved one has dementia. He asked the nurse why he feels so hollow and bad and upset when his wife hasn't died, she's still there being beautiful, smiling at him, speaking to him. I think he said that the nurse explained that he knows she's gone, and she'll never return, and he's mourning for her - even though she is alive in body. And that it's ok. It's ok for him to feel that way.

I think the people in this article need some kind of external councilling to get them through this, especially after she does finally die.

At the very least, they are probably going to hate Christmas celebrations for the rest of their lives.

[Shiroiyuki]

At the very least, they are probably going to hate Christmas celebrations for the rest of their lives.

This I agree with wholeheartedly.

I had a good friend die around Christmas a few years ago (drunk driver) and his parents now hate the holiday with a passion. Don't celebrate at all I've been told, although I've been rather bad about getting over there and visiting :unsure:.

[Aragami]

He said that talking through his experiences and feelings with them has been a great help, because they realise what people go through when a loved one has dementia. He asked the nurse why he feels so hollow and bad and upset when his wife hasn't died, she's still there being beautiful, smiling at him, speaking to him. I think he said that the nurse explained that he knows she's gone, and she'll never return, and he's mourning for her - even though she is alive in body. And that it's ok. It's ok for him to feel that way.


I was told that, if I don't take my meds, my brain will destroy itself and I will have dementia. I am currently most concerned with this, of all things. I have doubted my doctor. I think I just have super powers. I don't feel i can perform or feel on meds, and think their models are off.

[Leader Desslock]

Also, you aren't there. Maybe she makes fairly lucid gesticulations and expressions.
Maybe, but I've worked with a lot of kids with developmental delays. She's 15, and was diagnosed with this condition 4 years ago. The condition causes her to sleep 19 hours a day. She can't walk, has never spoken, and in the 5 hours a day she's awake, she has epileptic seizures.

That is not the profile of a child who was fit as a fiddle and struck down in the prime of her youth. That is not the profile of a child who you'd call "a bit slow". That is the profile of an individual with Profound Developmental Disabilities. Even barring the obvious hurdles to her development (degenerative brain disorder, heavily medicated to control the epilepsy, potential damage caused by constant epileptic seizures), this kid has had to develop in... what, 5 hours/day?

In my experience, saying "Christmas is her favorite time of year" is a bit of a stretch. I very much doubt the child has any concept of what a year is. Or time at all, for that matter. I can't imagine the child would understand an abstract concept like "holiday", much less the specifics of Christmas. If the child is capable of reacting to pretty colored lights, I'd say that's a positive sign; I would not be surprised if that is not the case, however.

As far as the "she loved swimming with dolphins" thing, I'd think it more likely that she was reacting to the sensation of floating: being light, being surrounded by a cool sensation, sensing an odd resistance to movement, etc. I'd put an even bet that the child would've had the same reactions in a backyard swimming pool, floating next to a beach ball. I doubt the child was aware of the dolphins' presence.

Now, say that this is the case, and say the kid reacted similarly when floated in the pool next to a beach ball. The optimist, full of hope, would say that the child was remembering her amazing experience with the dolphins, and was hoping they'd swim out again. They might even ask the child "Are the dolphins swimming around? Yes?" and when they got a smile, they'd view that as confirmation that the child was, indeed, remembering the prior Swimming With Dolphins incident.

The realist would look at the same scene and say "What are the common factors that caused the child to react? Is it likely that this child (who has never spoken, so nobody has a clear idea of just what she is capable of thinking or remembering) is remembering the sea mammals she met once, or is it more likely that she's simply reacting to the cool, immediate sensation of floating in water?"

Call me a realist on this one. I know I don't have the whole picture, and I'd be delighted to be wrong, but I very much doubt the child is capable of doing any more than reacting to immediate stimuli, if she's even capable of that any more. Ascribing anything more to her actions is (in my opinion) more likely to be a hopeful projection on the part of her caregivers.

[Shiroiyuki]

^And so what if it is? Let them have that if they need it.

[Leader Desslock]

^ That's their choice, of course, but I find it sadly ironic that in coming to love the little girl they've projected, they might not to get to know the little girl they actually have. And it doesn't sound like they have very long to figure that out.

[Shiroiyuki]

^ That's their choice, of course, but I find it sadly ironic that in coming to love the little girl they've projected, they might not to get to know the little girl they actually have. And it doesn't sound like they have very long to figure that out.

According to you the vegetable they actually have wouldn't be worth knowing.

And yes I agree, they probably don't have very long. But isn't it better they have something to remember her by other than just 'sat there unresponsive'? Even if that something is invented.

[tenshi_a]

No, that's awful. Who would want to be remembered as something they're not?

[Shiroiyuki]

So you'd rather remember your daughter as the vegetable who sat there sleeping all day, woke up just long enough to have a seizure, and never talk? Or would you rather remember her for enjoying the brief time she had with dolphins, or the joy she got at Christmastime?

And the joy you had while you experienced these things with her?

[Soluzar]

According to you the vegetable they actually have wouldn't be worth knowing.
You put words in a mouth which never spoke them. It's better to accept the girl as she is, however tragic that existence may be. It's better to know her for the qualities she might have than to invent ones that it is highly unlikely she does. Perhaps she has the capacity to be entertained, made happy by a simple thing. It is more precious to know that brief moment of genuine humanity, however evanescent it may be, than any number of fabricated Hallmark moments.

In my opinion.

[Aragami]

I think the matter is being dramatized to be more painful and more ironic than it is. It's being elevated to the height of how tragic could it possibly be made to be. Don't you think the world was made for able bodied people?

[Soluzar]

Don't you think the world was made for able bodied people?
Was made, perhaps. It is rapidly being altered to cater for those of less than fully able bodies. Few on this forum would be able to speak to this with such knowledge as I, and it is a fact that those with a less than perfectly able body can live a very full life.

The lack of an able mind is a different matter entirely, though. Fortunately I have been spared such direct personal experiences of this, but I have been in a position to make considerable observations of people in that situation. You will find it presents far more of a barrier. There are so many ways in which we humans may apply our ingenuity to work around physical disadvantages, but no amount of external help can entirely compensate for a mental disadvantage. We can help those of diminished capacity to bring out their maximum potential, we can use special techniques to help teach them the things they need to know and the coping mechanisms they need to use, but there is a limit. A person can only be helped so much, and that depends entirely on the individual.

[Shiroiyuki]

Before Thanksgiving there was a post at work about a local five year old boy who wouldn't make it to Christmas, as the cancer he'd been fighting was getting pretty bad. They weren’t even sure he’d make it to Thanksgiving. The post went on to claim he didn't want any presents this year because he wouldn't be able to play with them, but would rather get cards (with no money or anything, just a card). He wanted to see if he could beat the world record or somesuch, as it was his Christmas wish. I'm pretty sure Make-a-Wish was also involved, but I'm not positive.

Yes, I thought it rather odd that a five year old would decline presents and want only cards. I've met five year olds, I know they wouldn't pass up on a toy if they could help it. I thought maybe it was more for the parent's sake than anything, maybe bringing the Christmas spirit a little early for their son before he passed away.

But I sent a card anyway, because I'd rather allow someone grieving to hold on to their false hopes than pretend it doesn't matter, that it's wrong.

If you don't agree with that reasoning, that's your own choice. But that's how I feel.

[Soluzar]

You know, I don't see any false hope involved in that story. The child in question had a surprisingly pragmatic view. Wanted to set a world record rather than have people spend money on toys that would not benefit him. You sent a card, contributing in a positive way to his desire to set a record, and... that's it. I don't see how there's anything contentious about the story.

[Leader Desslock]

According to you the vegetable they actually have wouldn't be worth knowing.
I'm quite sure I never said that. I'm quite sure I never made a statement that placed any sort of a value on the child's life at all. My acknowledgment of the severity of her condition is not an estimation of her worth as a human being.

Just because I refuse to sentimentalize the child's state, don't make me out to be any more of a monster than I actually am. I'm monster enough all on my own.

[tenshi_a]

The post went on to claim he didn't want any presents this year because he wouldn't be able to play with them, but would rather get cards (with no money or anything, just a card). He wanted to see if he could beat the world record or somesuch, as it was his Christmas wish.

I remember various chain letters in the 1980s that were exactly like that, and then eventually the Guiness Book Of Records stopped recognising "most cards received" because of all the chain letters.

On topic:

http://www.thisisbristol.co.uk/wraxall/Bristol-family-enjoy-trip-lifetime/article-1045202-detail/article.html

This article is about the Disneyland trip, with the dolphin swimming. ^_^

It mentions that although Paige Badman can't walk or talk, she communicates with hand signals. It all makes a bit more sense now, eh?

If the family can actually communicate with the girl, that does make all the difference.

I just hate it when parents attribute "qualities" to their offspring that don't really exist. It's a bit of an insult, like they don't care who you really are, just have this ficticious idea of who they wish you were.

[Soluzar]

It mentions that although Paige Badman can't walk or talk, she communicates with hand signals. It all makes a bit more sense now, eh?
Comes as something of a pleasant surprise. Considering her condition, it's good that she's able to manage that, because otherwise she'd be a bit isolated, even when in the company of her family. Unfortunately it is probably to quite a limited extent. I can't really imagine life without being able to communicate. I dare say her family do tend to 'read between the lines' rather a lot, but hey... that would be their choice to make.

I just hate it when parents attribute "qualities" to their offspring that don't really exist. It's a bit of an insult, like they don't care who you really are, just have this ficticious idea of who they wish you were.
Exactly, I couldn't agree more. Mind you, I think a lot of parents do that to some extent, and are entirely oblivious to how hurtful and frustrating it can be. Everything that has been said still makes sense in the abstract. It's always better to know a person for who and what the are than to invent something more satisfying.

[tenshi_a]

Before Thanksgiving there was a post at work about a local five year old boy who wouldn't make it to Christmas, as the cancer he'd been fighting was getting pretty bad.

I think it must have been:

http://www.snopes.com/inboxer/medical/biorkman.asp

but I remembered:

http://www.snopes.com/inboxer/medical/shergold.asp

so forgive me for my scepticism.

I hope that with what the family have to go through with their son dying, they don't have to deal with receiving millions of cards for years, until they give up and move house...

[Shiroiyuki]

Yeah, it was Noah. Poor little guy.