Wednesday, September 05, 2007

True or false : Joshua needs your help

Update : the information I had found in the Internet regarding this illness was not even nearly complete to estimate the whole story, so I have updated the bits and pieces provided in the comments section, striking over pieces here, and have to update the category. Not scams.

This is a real child, and with a real disease, of which the costs to cure him or to help him get as normal as possible life are not cheap, so the gala evenings are a way to help them be able to afford the treatment. Which they cannot have done closer to where they live due to the rarity of disease, as the Irish hospitals are not prepared for treating it.

Here a link for ways for helping his family.


This as a piece of email may be scam and spam questionable regarding companies email acceptable use policies. Not the blog post itself - but the points Rahina makes in it. This is how I run to it.

Come join us on Sat September 29th for a Drinks Reception, 4 Course Banquet, Goodies Bag for everyone worth €150!! Live music and dancing and an auction!!
Every single penny goes to Josh Huffy Duff from Castletownroche, who is 20 months old and has a rare medical condition which necessitated both his legs being amputated. This money will fund his medical treatment in Shriner Hospital, Chicago as well as prosthetic limbs.
For more details on the night planned and Josh & family see the offical email below from my friend Gerry, formerly of RTÉ Radio 1.
Tickets are €100 per person - so when you think of it, you actually *make* €50 by going and getting the goodie bag alone
I know we’re all short of cash these days, but I think something like this really puts things in perspective - please pass this on to as many people as you know, we really need a big turn out for this event to help Josh and his family.
If you can go, we require a minimum of 50% deposit (or if possible the total amount) — Cheques made payable to “For Josh.” — Their second son has autism but is responding very well on the one to one teaching method. However, the costs involved with Josh are horrendous.


1. It was sent out to him in company email (not where I work for, nevertheless)
2. It underlines, not only in this email but also in the whole country wide media coverage how this is a sick child and how they want to raise money for it.
I'm not saying this child would be fake - the newspapers on national level probably would have noticed by now if it was. I'm not saying the kid would not be sick either, or that getting new prosthetics etc would be cheap either. It for sure isn't. BUT a few things .. The story seemed odd as the medical details provided did not seem to match. The things that seemed particularly odd :

They live in Ireland, in a country where their some sort of national health insurance should cover the costs of it. The system should be closer to the UK NHS style than the wild range US market.
Where the hospitals are not prepared to deal with this disease. Where they should cover it.

Why does a under 2 years old need 2 prosthetic legs? He will grow so fast out of them - good point (in Rahina's post)

From comments:

2. Children are given prosthetic lower limbs at the same age they would be starting to learn to stand and walk. They get adjustments made as they grow, and get new ones as they outgrow them. The earlier they start, the better they learn to use them. Weight bearing and walking helps shape the hip sockets in the toddler years, so if they don't walk early enough, they may end up with deformed hips that will make it more difficult to wear prostheses as an adult.


The exact disease of this child is not really mentioned in the articles in the national newspaper. The event mentioned is not organized by RTE but by a private person. Or they do mention arthrogryposis as the disease, but that can't be it.

Arthrogryposis, also known as Arthrogryposis Multiplex Congenita, is a rare congenital disorder that causes multiple joint contractures and is characterized by muscle weakness and fibrosis. It is a non-progressive disease.


Since when is amputation a cure for congenital, non-progressive muscle and joint wasting disease?

1. Children with severe arthrogryposis sometimes have legs amputated, when the severity of the contractures are such that they cannot be corrected to any kind of functionality. Severe contractures can be painful as a child grows. It is not common, but it happens. There can also be complications from previous surgeries that make it the best option.

Brave Joshua Duffy-Huff was born with a rare condition which meant he had to have emergency surgery when he was just one month old.


That is over 1,5 years ago? This is unfortunately one of the serious cases about AMC. And far from fun for a small child, or a person of any age.

Due to complications and limited medical resources in Ireland, doctors have amputated his legs and now there is discussion of his hands or arms.


This looks identical to the scam email Rahina received. Same $ 100 food deal.
It is better in this case if they actually DO manage to organize more people for the dinners and other help, so that the child will be able to have as normal and happy life as possible.

Shriners Hospitals for Children is a network of 22 pediatric hospitals in the U.S., Canada and Mexico providing specialized care for orthopaedic conditions, burns, spinal cord injuries and cleft lip and palate. All services are provided at no charge.


Is on big bold letters on Shriners hospital webpage.

Again, from comments clarified :

3. Shriners hospitals do provide treatment free of charge. And parents are offered places in Ronald McDonald houses if they need them. However, they do not pay for airfare, for incidentals, or for loss of wages and babysitters for the other children while a parent is at the hospital with the child. The RM houses are sometimes full, and the hotels that you are bumped to can be more expensive. You can usually only get a visa to come to the US for treatment if you can get everything done in one shot, meaning some serious time away from home. I researched this on behalf of a parent from Pakistan who was hoping to bring his child to Shriners.


Living months there to be with the child to get him back to health will be far from cheap.

I hope this will help to convince anyone else running to the story of Joshua and wondering if it is a real story or a made up one. Now that it is debusted as a made up story, consider helping him.

Thank you for the information priovided additionally in the comments. My apologies.

I would like to see this kid grow up keeping the happy smile he has in the only picture that I've seen of him in the internet.

7 comments:

Carrie said...

This may be a scam, but there are a couple of errors in your explanation. My daughter has arthrogryposis (AMC), so I have some knowledge here.

1. Children with severe arthrogryposis sometimes have legs amputated, when the severity of the contractures are such that they cannot be corrected to any kind of functionality. Severe contractures can be painful as a child grows. It is not common, but it happens. There can also be complications from previous surgeries that make it the best option.

2. Children are given prosthetic lower limbs at the same age they would be starting to learn to stand and walk. They get adjustments made as they grow, and get new ones as they outgrow them. The earlier they start, the better they learn to use them. Weight bearing and walking helps shape the hip sockets in the toddler years, so if they don't walk early enough, they may end up with deformed hips that will make it more difficult to wear prostheses as an adult.

3. Shriners hospitals do provide treatment free of charge. And parents are offered places in Ronald McDonald houses if they need them. However, they do not pay for airfare, for incidentals, or for loss of wages and babysitters for the other children while a parent is at the hospital with the child. The RM houses are sometimes full, and the hotels that you are bumped to can be more expensive. You can usually only get a visa to come to the US for treatment if you can get everything done in one shot, meaning some serious time away from home. I researched this on behalf of a parent from Pakistan who was hoping to bring his child to Shriners.

AMC is not a common condition, and even pediatric orthopedic surgeons at major medical centers may not see more than a handful of children with it in their careers. For a child who is severely affected, it is best to go somewhere that really understands it, which may not be available in Ireland.

This may be a scam, but not for several of the reasons you believe.

Ani said...

Carrie makes some great points about AMC.

I believe this is the same child who appeared on Oprah's Pay It Foward last year - see link
http://www.oprah.com/tows/slide/200703/20070327/slide_20070327_284_110.jhtml

The money raised from this event probably will cover the cost of travel expenses from Ireland to Shriners - as he will get a new pair of 'legs' each year as he grows.

PS (we miss ya carrie & pnut too!!)

Joshua's mom said...

I am stunned to read you comment. You are talking about my son. Joshua was born december 2005 with arthrogryposis it was so severe that he had to have both legs amputated at one month old and because we live in ireland we were not able to see a hand surgeon until he was over four months old had he been born in the usa the would have been casted as soon as he was born now it's too late. the fundraiser is one off in ireland being organised by friends of the family and is to help fund us giong over to the states foe help yes shriner treatment is free but as we are not american we will not be given accomodation and his legs do not come cheap as for why he needs two pairs ? they are not a fashion accessory he has a second pair because he grew out of the last pair and as he gets bigger the type of legs he needs changes as well. i feel sick that someone would suggest i am trying to make money from my son it has cost us thousands to travel already and we are only in his second year of care. you still think he is a scam? go to pay it forward for hope page or to oprah.com archive march shows and click on the good news episode he is there.

Ani said...

Joshua's Mom!

I'm so glad you cleared that up!

I hope Joshua is doing well.

I have a 5 year old (Abby - forabby.com) with AMC
Our AMC Support group was so thrilled to see a child with AMC on arthrogryposis on Oprah!!

We welcome you to join us - click on my name to follow the link :)~

Wishing you well

anna said...

Thanks for the information I had not found in the internet. Sorry for doubting this story but I have previously seen so many made up stories with similar details, unfortunately.

I have added a link to the HOPE details of Joshua, as that was the only details I could find for alternatively helping him (for anyone who doesn't live close to where these galas are). If there are more local ways to help him, I'll be glad to add.

Carrie said...

Thank you for making the corrections. I have seen worse misinformation put out by mainstream news sites that refused to even acknowledge my complaints, so this means a lot.

Joshua's mom said...

it was comforting that you were willing to check the facts and reconsider your opinion. i have a very special little boy and the purpose of this single dinner is to try to help him aswell as raise awareness of a seldom seen condition in this country.