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Praying for Noah


bionicmlle

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Oh, guys… I hate to do this but it has been bugging the hell out of me, so I thought I'd check myself with the Jingers….

Anyone follow the blog Praying for Noah? (prayingfornoah.com) This darling child has been diagnosed with a mitochondrial disease. The blog has been up for several years and I have been following for ages. The mother seems like a wonderful, caring and diligent, God-fearing mother - she also has a brood of children and home schools as well as runs a homeschooling business (of sorts) with her husband.

The blog has reported on many, many complications related to Noah's illness and several years ago the mother and friends started a modest fundraiser - selling $1 bracelets and magnets to help out with his care. There also have been several auctions as fundraisers, etc. I have never been in doubt of the mother's devotion, truthfulness or the child's symptoms until recently some things have just been….weird. About two years ago she posted several times on the heart-wrenching decision to place Noah on hospice care and that he had expressed a desire to not go back to the hospital. Totally reasonable! She even posted his childrens-version of an advance directive. It seemed that they were preparing for him to die. They took a MAW trip which was fraught with worry if he would be stable before/during/after. I certainly know that disease course can be waxing and waning and indeed a "six month prognosis" for hospice is nothing that is set-in-stone. But, according to the blog he has rallied then declined several times and most recently back in and out of the hospital despite previous posts that he wanted to avoid hospital stays and painful, scary procedures even if they extended his life. Now, they are in a fundraiser to get a new van in order to provide transportation for him and the fundraiser is going GREAT! But Noah continues to decline during the fundraiser…. Things that make you go HMMMMMM???

I HATE that this gets my hackles up, so does anyone have words of wisdom to ease my mind OR has anyone else had a scam-y feel from this blog??

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Have you considered writing to the Warrior Eli Hoax blog and asking them to investigate? Taryn is very very good at uncovering scams and I think she's very respectful to the people she catches perpetrating hoaxes.

I'm not familiar with the blog but the story does sound suspicious, with the changing stories and the asking for donations for a van when he's in such a state of decline. Sadly some people do long cons and it takes years for them to become cocky and overplay their hand. If you ask Taryn to investigate I'm sure you'll get an answer. It can't really hurt to offer good thoughts or prayers, but definitely don't donate anything you're not okay with losing to a hoax.

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Vex that's a good thought. I may contact Taryn. I haven't given money and 95% of me feels its legit but I find my mind drifting back to it many times lately and just wondering....

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I don't think there's anything to lose. If she's genuine it's not like Taryn is going to do anything to alert her to the investigation and upset her, and if it's fake it needs to be exposed.

It is always basically dodgy when a person straight up asks for money. It's rare for people with genuine need to outright ask for things in that way. It's unusual for people to want a new car when they have a dying child. Sometimes parents do stupid and greedy things (look at Lauren from Sparkling Adventures - she took photos of the police searching for her son's body in a river and posted them to her blog), but if your gut says something isn't quite right you should trust your instincts.

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I don't think there's anything to lose. If she's genuine it's not like Taryn is going to do anything to alert her to the investigation and upset her, and if it's fake it needs to be exposed.

It is always basically dodgy when a person straight up asks for money. It's rare for people with genuine need to outright ask for things in that way. It's unusual for people to want a new car when they have a dying child. Sometimes parents do stupid and greedy things (look at Lauren from Sparkling Adventures - she took photos of the police searching for her son's body in a river and posted them to her blog), but if your gut says something isn't quite right you should trust your instincts.

I agree that there a lot of scammers out there, many with very long cons. But I disagree that it is particularly rare for people to ask directly for things on the Internet. Part of my old job as director of a non-profit social service agency was fundraising. Over the last couple of years there has been a huge surge in people directly fundraising off a variety of sites. It's a pretty interesting social phenomenon.

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The thing that gives me pause about her is that she's online friends with another mom who, until fairly recently, blogged about her own terminally ill child. This woman has LONG pinged my scam radar, and my gut says that something isn't right with her story. Over the weekend, something came up about her on the OT side of McKmama Without Pity and confirmed that other people had the same suspicions. You are known by the company you keep and all that, so that's my beef with Kate Estes.

I think Kate seems like a genuinely kind and caring person, and I don't doubt that Noah is extremely ill. I think it's probably easy to agree to one online auction or fundraiser, see the money roll in with minimal effort on your part, and not be able to say no to the next one...or the next one. It's not like they will ever raise enough take care of all of Noah's needs forever, and I think to some extent the constant fundraising is akin to an addiction.

I also think a lot of people who get involved with "sick kid" blogs have only the best intentions and really do want to help these families, but don't know anything practical to do aside from an online fundraiser, because they don't actually KNOW the family and its needs.

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I don't think it's unusual for people to ask for things over the internet. There is nothing wrong with fundraisers, kickstarters and collections. I think it's unusual for the parents of terminally ill children to solicit donations for a new car, and I think it's suspicious when bloggers start collecting 'tips' or asking for donations for nothing in particular(I'm speaking generally here, not specifically about any one blog).

A LOT of bloggers do this (personally I think it's almost always in poor taste and done by people too lazy to make an actual living in the bloggosphere - in my experience both online and off the people who are in genuine need are not nearly so quick to beg for charity as people who want rather than need) but it's also a red flag when it comes to scams and you need to examine the context for clues as to whether or not the person is genuine, especially if your gut says something is up.

I'm glad that this is apparently real insomuch as it's disgusting when people fake these situations for attention and money. It's a terrible situation, though. In the end it's better to be cautious and do your research than blindly give and in this case it paid to ask around.

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The thing that gives me pause about her is that she's online friends with another mom who, until fairly recently, blogged about her own terminally ill child. This woman has LONG pinged my scam radar, and my gut says that something isn't right with her story. Over the weekend, something came up about her on the OT side of McKmama Without Pity and confirmed that other people had the same suspicions. You are known by the company you keep and all that, so that's my beef with Kate Estes.

So it's not just me, regarding the other mom. Even before her journal disappeared for still-unknown reasons, I couldn't help but feel that something was rotten in the state of Oregon.

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I've been FB friends with her for quite a while – the little boy has the same birthday as my younger daughter - and I do actually think she is on the level. The bus fundraiser - well, IF, and of course there's always that little bit of suspicion, especially after we've been scammed by Elle and 'Ruth' -IF she's on the level then there have been so many problems with the old bus, that they genuinely need a new one. The fact that the little boy (I won't use the name of a minor on here) is worse at the moment - well, he was relatively stable until recently. As stable as it's possible to be with mito, and he may stabilise again. The bus is needed whatever.

Personally, although I have seen the appeals, I won't contribute to the bus fundraiser, but that's on principle. Nice as Mom is, and she seems sweet, caring, down-to-earth and has a sense of humour, she's made it clear where her political allegiances lie, and she's very anti-Obamacare, and also homophobic. I won't give money to someone like her who has the church support network to fundraise for her, so she can afford not to care about the people who don't, and to disapprove of the option that gives them a support network. I doubt, if, despite her sweetness, she would support anyone who didn't share her beliefs, or lived an alternative lifestyle, so I can’t help her out.

I do, however, find it completely distasteful that our very own Elle - Aria Clements - occasionally trolls her status updates when Mom posts medical updates about the boy. All of them saying 'Oh yes, wow, well, he has it bad, but I had it worse. And BTW you should do this about it.'

As far as the relapses and remissions go, mitochondrial disorders are exceedingly complex, and unfortunately many mothers with mito children are at some point suspected of Munchausens. Please forgive me if you know this already, but the basic (very simplified) situation is this:

Mitochondria are (originally) symbiotic cells that at an early stage of multicellular creatures' development, embedded themselves into the eukaryotic cell. (That's a cell with a nucleus. We all have these cells: the only prokaryotic (non-nucleus containing) cells are bacteria and archaea.) Mitochondria function (again this is simplistic, so any scientists correct me please) as the 'powerhouse' of the cell, and are crucial to the process of energy transport. They generate most of the cellular ATP (Adenosine triphosphate) that is the chemical energy involved in cell growth, repair, reproduction and death.

When mitochondria are defective, then the chemical energy transport around the body is also defective. This means that systems – digestive, respiratory, cardiac, excretory – can blip in and out of functioning like defective lightbulbs on the flicker. On a good day, there’s maybe, just, enough energy. On a bad day, or if the body is also trying to fight what for most of us would be a ‘normal’ infection, there isn’t. When this happens, the body starts to shut bits down.

Also, the effects of mitochondrial disease can vary. Since the distribution of the defective mitochondrial DNA may vary from organ to organ within the body, and each mutation is modulated by other genome variants, the mutation that in one individual may cause liver disease might in another person cause a brain disorder. The severity of the specific defect may also be great or small. Some minor defects cause only "exercise intolerance", with no serious illness or disability. Defects often affect the operation of the mitochondria and multiple tissues more severely, leading to multi-system diseases.

So a child can present with multiple or single, complex or simple problems. With severe disease, it's obvious, and the babies usually die within a year. However, some mitochondria myopathies (the spectrum of the diseases) are less serious, and they, bluntly, take longer to destroy the body organ by organ and tissue by tissue. These children can live until their teens, suffering from an increasingly complex array of medical interventions. With very mild mitochondrial disorders, people can live a longer, but very restricted life. In any of these cases, a massive infection, an immune system insult, or a sudden worsening of the disorder that causes one organ to fail (kidneys, for example) can cause very sudden death.

Living requires extreme medical intervention - it's not uncommon for these kids to be trached and vented, on TPN (total parenteral nutrition) because they basically don't have a working gut, fed from a gastrointestinal tube for many years. (The ethics of this extreme medical intervention is another issue, and one I do not propose to get into here.)

Another issue is that because this ‘mitochondrial disorder’ is passed down the maternal line, and all babies inherit their mothers' mDNA, it’s not uncommon for more than one child in the family to inherit a mitochondrial disorder to some degree. The inheritance issues are complex, but males can carry the disease. In effect, if the mother carries the mutated mitochondrial DNA, then all her children will inherit it too, but not all may show severe symptoms. Whether the children show symptoms if the male is the carrier depends on the usual Mendelian laws of inheritance.

If you’re wondering why I, as a non-doctor, know all this, it’s because I, and my younger daughter have both had very severe ME, and there is some now some thought that ME can be classed among the mitochondrial disorders, since its most salient feature – extreme muscle weakness and fatigability – can be down to defective energy transport in the mitochondria. So I’m finding out about it.

In any case, to return to the family in question, my personal opinion having been a (quite distant) ‘friend’ is that they are on the level. The child is sick, and getting sicker. But there is a perfect possibility that he will survive yet for some years with the major medical support he’s getting, and equally, given the disease, there is, regrettably, a possibility that he has very little time left.

Under the circumstances, I would be very sorry to see any grief given to the family, when they are likely to have so much to bear. They are engaged in a fight they can only lose, sadly.

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Artemis, great explanation. This is probably a question better googled, but how can men carry a mitochondrial disease?

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http://www.mitocanada.org/about-mitochondrial-disease/how-is-mitochondrial-disease-inherited-2/

I found my best explanation here. (I like the Canadian health sites: they're brilliant.)

As I understand it, from my lay-person's perspective it's like this:

Mitochondrial DNA (mDNA) is inherited only from the mother: that's how the genetics companies manage to tell you where your maternal lineage comes from, by typing the mDNA in your cells.

Any child born to a mother who has the mutated mitochondrial DNA gene will have the disease. They will all inherit the gene. Some may be asymptomatic. But even if the other parent has unmutated nuclear DNA, the children will still have the disease.

But we inherit DNA from both parents, and there is also DNA in the nucleus of the cell that is encoded from the paternal line.

This DNA can also carry the mutations that cause mitochondrial disease. If your mother has the mutated nuclear DNA that causes the disease, and so does your father, then you stand a chance of getting mitochondrial disease. The Mendelian laws indicate that of the children of parents who BOTH carry the mutated gene in nuclear DNA:

25% will have a mitochondrial disease.

50% will be carriers

25% will be free of the disease.

If one parent has the mutated nuclear DNA gene, and one does not,, then again the laws of Mendelian inheritance say that:

50% of the children will have the disease

50% will not, nor will they carry it.

It's not a good scenario, is it?

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Well, at very least, in my personal opinion, they would be wise to have a genetic assay done before they decide to sprog, yes.

A reasonable assumption might be, that if other children of a family appear to be perfectly healthy while one has severe mitochondrial disorder, then both mother and father are carriers of the nuclear DNA mutation, in which case some of the children would undoubtedly be carriers, and others would be completely clear. I am talking hypothetically here, as I don't want to discuss specific issues for minor children.

In that situation, I would encourage my own children to go for genetic assay anyway, and if necessary also encourage them to have IVF, and select healthy, non-carrying embryos to be implanted. But that's because I'd do it that way: one can't make the choice for anyone else.

For a family that believed in quiverful and was open to any child, however, then presumably they would ignore the genetic assay and go right ahead. Personally, having looked at the issues for children with mitochondrial disorder, I would not run the risk of giving birth to one. The chances of them suffering a nasty, painful long-drawn out death are extremely high.

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I only know of this particular child from a casual distance. I do know quite a few families dealing with Mitochondrial disease. Most families with multiple children have all of the children muscle tested, even the healthy children. It's the same response you get when a child shows up with Cystic Fibrosis, once one is diagnosed you check them all.

To my knowledge, this family is legit. However, my knowledge is very casual. I'm friends with a mother in GA with two girls with Mito who is good personal friends with this mother and has met her personally. I have not. I have met my friend personally through Parent to Parent before we moved to another area of the US.

What I can tell you is that impending death does not negate trying to come up with needed equipment for your special needs child. Micah lost significant function and mobility in February/March of last year. By May, I realized this was not a temporary set-back of his function and I was trying desperately to find a way to give him back his life and his ability to go out with his family. He died first of July while I was still in process trying to find a way to finance and secure a medical stroller for him. Yes, I knew he was dying. Yes, I knew death was in fact imminent. It was precisely that it was so close that I felt such urgency to get the stroller. I wanted him to have those last trips to the zoo, to the museums, to eat out with his family. We didn't get them. I didn't go public with fundraisers and was fighting insurance and support services instead. I regret that I didn't go public, even online public. The last family trip Micah got to participate in was the major soccer tournament on Labor Day that his big brother's team won (big brother had the winning goal) in Atlanta the fall before he died. Not having necessary medical devices robbed him of the opportunity to go out and simply live life with his family those last months he had with us. I can completely understand why a family would be trying to get a new wheelchair accessible van even at this stage of the game.

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So it's not just me, regarding the other mom. Even before her journal disappeared for still-unknown reasons, I couldn't help but feel that something was rotten in the state of Oregon.

OMG, I've been "following" Kate Parker/Joshua since even before Joshua was born (she was on a parenting forum I read). This woman is a complete B**** and always has been. I've been dying to know the dirt ever since she locked down her caringbridge pages. Heading over to MWOP now to see what's up!

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snickerz, also check out topix.com/forum/city/grants-pass-or/T3AKO7LK459AOM5O0. Some of the posts there sound less than credible, but most of them are from people like us, who have long suspected that something just isn't right.

I have "known" Kate online for many years, in a few different forums, and while I agree that she can be bitchy when people disagree with her, I often found her relatable, even though her situation (whether real or manufactured) is beyond comprehension. But there have been so many, MANY red flags over the past year or so indicating that she is not entirely (or at all) on the up and up. I would link to posts if they were accessible, but everything is locked down now.

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I thought there was a terminally ill child named Josh? is this related. Its all over MWOP and now on GOMI story seems made up.....they removed the younger kids after one was found to hAVE TO many narcotics in his system. He is thriving in foster care and doesn't even have cancer.

The warrior Eli group broke up sadly

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I thought there was a terminally ill child named Josh? is this related. Its all over MWOP and now on GOMI story seems made up.....they removed the younger kids after one was found to hAVE TO many narcotics in his system. He is thriving in foster care and doesn't even have cancer.

The warrior Eli group broke up sadly

There really is a child named Joshua, but beyond that, it is impossible to say what parts of his story are true. I don't think that even Kate, his mother, claimed he had cancer, but she has written for years about his many complex, rare conditions, hospitalizations, surgeries, and brushes with death. The narcotics were said to be for management of severe, unremitting pain related to, I think, his brain stem condition.

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But this is not the same family as the family the OP was discussing, just for the record. There doesn't seem to be any question about their bona-fides.

FTR, towards the end, children such as this little boy are often on dilaudid (hydromorphone hydrochloride) for the management of severe pain, administered by self-activated pump or through the lumens of a Broviac line. They have to graduate to dilaudid, as often you need to be tolerant of, and unaffected by, other opiates before you can take it.

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But this is not the same family as the family the OP was discussing, just for the record. There doesn't seem to be any question about their bona-fides.

Right. The connection between the two families is that Noah's mother is (was?) a friend of Joshua's mother, and organized an online fundraiser for Joshua and his family some months ago.

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I didn't know that. :( Do you know why?

there was a big blowup between a couple members and taryn over stupid crap she didn't deserve it. Taryn deleted it and many of us are still pretty upset about it. It really was a fun group and working together to solve hoaxes actually made many pretty close.

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Right. The connection between the two families is that Noah's mother is (was?) a friend of Joshua's mother, and organized an online fundraiser for Joshua and his family some months ago.

ok got it.... Joshua's story is the one I've been reading about on another site.... he and his sister are the one reported to of moved to foster care. I heard its now on GOMI but haven't been there yet

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