A very sad story, need your help....

Estrella1

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Jan 13, 2006
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Hi Everybody, I want to tell you a very sad story because I need some advices and some ideas to help this family.
First I have to tell you a little bit of my life....
I arrived in this country in Jan. 2001, alone without speaking spanish (I speak some other languages). I spent the first year in a resort where I could talk to everybody and learn spanish.
After that year, a poor Dominican family helped me so much to find an apartment close to their house, they cooked for me, inviting me all the time to their house, taught me spanish,....
They never asked me one peso, nothing, nothing nothing....
I still keep in touch with them but not too much because I live in Puerto Plata now.
This afternoon I was on the way to Luperon and I stopped in front of the house to say hello...and then....
The 9 year old little boy was on the floor, like an animal. He was watching television.
It seems that since last month he cannot move anymore. They went to some specialists in SD and Santiago. The mother could not tell me the name of this disease and I couldn't reak the writing of the doctors!!!! It seems it is something with the bones which has a very bad evolution.
They just told her not to spend more money, it seems that it is no more necessary!!! Could you imagine the reaction of those poor people.....
So, the first thing I plan to do is send them a doctor friend of mine to examine this boy and give me a real diagnostic. Once I have it I would like to contact some doctors abroad to see if something could be done.

Do you have some more ideas to help this family ? The mother is so desesperate and shows so much dignity!!!!! She is alone with 3 children (the father has a second wife and it seems he has to drink a lot because he feels so sad!!!), the boy is the youngest one. The mother cannot work anymore as the boy needs a constant presence day and night, so, no more money....
Does anybody know where I could buy or rent a used wheel chair, because this boy will get crazy laying all the time on the floor, seeing nothing from outside....(you know in the countryside the children are always playing outside...).

Also, if some of you have games, books (in Spanish better), or anything else to give an occupation to this boy this would be fantastic. He is so sad because he cannot go to school anymore.

If you have other ideas, they are welcome. Thank you very much for your help, this will be so important for them and also for me, this was such a shock, I feel so sad.....
 

AZB

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Jan 2, 2002
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what is the name of the disorder. Please find that out first and tell us.
AZB
 

BushBaby

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Further,
Can the child SIT? I am thinking if he will be able to use books if they are sent to the family, will he be able to colour, read, draw etc?
Would he be able to use a record player if one was sent & could you get the "learning cassets", would this be best as a battery power or mains voltage?
Where is the family situated just in case any donating companies ask?
What does the specialist in Sto. Dgo. or Santiago give as a prognosis (long term) & what life expectancy does the child have? (horrid question but one that needs to be asked I'm afraid!).

Come back with these answers & any others you think might be helpful to the kind hearted here & I think you may get some helpful suggestions/ideas!! ~ Grahame.
 

CrazyGurl

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Apr 17, 2006
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Perhaps I can help...

I have a great contact of a wonderful American doctor in Santo Domingo. Children are her specialty! I also know of a lady who run's a children's home and she has found access to wheelchairs etc. Please PM me if you want to make further contact. I would love to help.
 

cris

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Nov 29, 2003
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That touch me a lot...

Unfortunally when you're poor in DR you don't have the rigth to safe your chils, because a sick person withouth money doesn't interested any "doctor'... Is unhuman saying to a mama "is nothing to do".... Unfortunally the reality in terms of medical assistance is disgusting and I ask me where those 'doctors' having is degree, mas specially I would never understand that he can live with themselves
I'm living here at some years and I heard all kind of sad stories about stupid diagnostics, t probably not even he know exactly what he has....
Well, a part of all this 'doctors' there's also some very good ones... Si I know a Orthopedist, one of the best there, s at clinica Abel Gonzales, Dr. Krantz... so do you thing you could bring the kid there? You're friend doctor can he give us a diagnostic that allow us to go to the good specialist? Please let me know what, I'm willing to go there with you... I must act quick, we should give a dignity to the child..
For the chair, I thing that it should be a good thing and I'll check where we could get it...
I also have a playstation 1 that nobody uses and I'll be glad to offer him that...
 

cris

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Nov 29, 2003
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Having symoaty for those cases is nice, we thank you your comment, but we don't know which is the specialist to consult, anyway is sad to see that money is more important than saving human lifes... specially poor people...

I always thougth that a doctor should save lifes, no matter how, otherwise which are their motivacion to choose medicine... Anyhow if there was need for suire we'll find the money... and Thanks God there are still some very good doctors with a big heart... so I'm sure we'll manage it keeping our legs and arms...
 

Estrella1

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Jan 13, 2006
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sad story

Thank you very much for all the ideas and messages. Tomorrow morning my friend will go to the house and examine the boy. Once i get some results, in the afternoon or on Friday, I'll come back with the name of the disease and some news - I hope so! Thanks so much.
For BushBaby, this nice family lives in La Sabana near Luperon, on the main road.
If you want some more details, please send me a PM. Thank you.
 

Estrella1

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Jan 13, 2006
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Some answers...

Finally I have some answers to my questions....
The name of this disease is "Duchenne Muscular Dystrophy". I found something very very interesting about it, go to : http://www.ygyh.org/dmd/whatisit.htm.

The most importantand urgent now is to find a wheelchair. Emmanuel really needs it to go to school, go outside of the house, have other activities with the family (now he stays the whole day in front of television!). I suppose it is very important to maintain the contact with all the family members and with the friends.
As he can use his hands, some books or other activities would be very useful.

I have read that some medicine could be given to slow down the process of this disease, but I think that this is the doctor's job. Once we know the price of the treatment, maybe some people willing to help could do it. We'll have to coordinate.

I asked the mother if she allows me to give her address and she said yes. So, if some people would like to visit the child and the family (or send a card or a book or.....), just send me a PM. But those people don't speak English.....You'll see the fantastic welcome you'll receive (unless the mother is very humble and shy). and this is a real good lesson for all of us, especially for me : their reaction is fantastic, they now that the future is very dark but they still keep the faith in life and in God. This is really admirable......

Thank you to all of you who want to help those nice people.
 

Hillbilly

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Jan 1, 2002
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MD...the Jerry Lewis Foundation does a lot of work on this. Uncurable. Terrible for the tykes. Jerry's Kids....I think that's right, but it could be Multiple Scleroisis?? anyway, we got to help the kid.

Maybe we should find a wheel chair for the tyke...might help. And Estrella, find out more and tell us what to get that will help the child...he'll be Our Kid!

HB :D:D
 

Rocky

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Hillbilly said:
MD...the Jerry Lewis Foundation does a lot of work on this. Uncurable. Terrible for the tykes. Jerry's Kids....I think that's right, but it could be Multiple Scleroisis??
I think you had it right, that it's Muscular Dystrophy, although I doubt that the program extends outside of the USA.
Hillbilly said:
anyway, we got to help the kid. Maybe we should find a wheel chair for the tyke...might help. And Estrella, find out more and tell us what to get that will help the child...he'll be Our Kid! HB :D:D
Let us know.
 

rellosk

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Mar 18, 2002
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Estrella1 said:
The most importantand urgent now is to find a wheelchair. Emmanuel really needs it to go to school, go outside of the house, have other activities with the family (now he stays the whole day in front of television!). I suppose it is very important to maintain the contact with all the family members and with the friends.
As he can use his hands, some books or other activities would be very useful.
What does it cost for a wheelchair in the DR?

I'm sure if the DR1 community believes this story to be real (sorry to place doubts, but this is cyberspace and there have been more than a few deceptions on this site); we could raise enough money to purchase a wheelchair and whatever else is necessary to make this kids life easier.
 

El Tigre

El Tigre de DR1 - Moderator
Jan 23, 2003
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Hey I'm down. I can contribute for the wheelchair.

We just need to find out if this is legit as Rellosk stated above. Sorry about this Estrella but we have to do that in order to help.

As someone finds out if this is legit let me know. I'm down to help!
 

Estrella1

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Jan 13, 2006
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Thank you

Hi tigre,

I understand your meaning and you're right, I would do the same. I'm ready to give any information (pictures, name of the doctors,...anything you could want, just tell me) and the address of those people to anyone who would verify. Those people are really poor and what happen is horrible. Now that I know this disease and have some details, I don't know what I have to tell the mother : the truth or say nothing... This is a difficult question. I suppose no doctor will take the necessary time to explain her what it is exactly, but I don't know if she wants to know... What do you people think???? She is Christian and goes to church almost every night, unfortunately her pastor is not very clever (excuse me to say that, but I know him also) and I don't think he could explain the things honestly.

So, just tell me how you want to verify, I'm ready to do anything to proove you that this is true and honest. If you trust a DR1 member, I would be pleased to go with him there and introduce the case.
My e-mail is : arroyoamargo-amigos@yahoo.fr.

I aslo would like some advise from everybody about what, when and how to speak about their future....

Thank you anyway to anybody ready to help. We don't have lots of time left, please hurry...
 

susie787

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Jan 18, 2006
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muscular dystrophy

Hi i just thought id let you no a few things about muscular dystrophy as my partner was diagnosed with a limb girdle form of md 4 years ago fortunatly for us the lesser than the duchenne.as we have found there is no treatment or cure for this illness and unfortunatly life expectancy with duchenne is late teens to early twenties, a wheelchair is paramount for this child although it would have to be an electic one for this little boy otherwise he will not be able to move it himself although i no if this family are poor that might feel impossible.i live in england and am a member of the muscular dystrophy campaign here so if i can help in any way by getting imformation or help then let me no. susie xx
 

rellosk

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Mar 18, 2002
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Estrella1 said:
So, just tell me how you want to verify, I'm ready to do anything to proove you that this is true and honest. If you trust a DR1 member, I would be pleased to go with him there and introduce the case.
My e-mail is : arroyoamargo-amigos@yahoo.fr.
I believe you mentioned that this family lives in Santiago. If so, Hillbilly, AZB, or one of the other DR1 Santiago residents; could you please check and see if this is a legimate.

Meanwhile, Estrella1, you can check to see how much a wheelchair costs in the DR.
 

rellosk

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Mar 18, 2002
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susie787 said:
i live in england and am a member of the muscular dystrophy campaign here so if i can help in any way by getting imformation or help then let me no. susie xx
Do you know if there is a MD organization int the DR?
 

Rocky

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rellosk said:
I believe you mentioned that this family lives in Santiago. If so, Hillbilly, AZB, or one of the other DR1 Santiago residents; could you please check and see if this is a legimate.

Meanwhile, Estrella1, you can check to see how much a wheelchair costs in the DR.
From Estrella's post, I believe they live in La Sabana near Luperon.
 

cris

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Nov 29, 2003
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As a mother I can't imagine your pain, but I'm glad that you could give us all your opinion based on your experience.... The problem is that here is already difficult to find a normal one... Imagine an electrical one... Where could we get one and how much?.... Please let us know as soon as possible, depending how much I would probably be able to offer him that.... Tell me if we buy it in England could you send it to Miami?.. I have a PO Box there and it would be quicky to have it here............ Othwrwise a name of any American manufacturer?
Waiting for your answer...
I admire your participacion, and let me tell you that I admire you're guts... I couldn't imagine how it should hurt... being unable to safe our child, and even if I'll never understand why that happens to our kids I'm happy to know that some of them can find a courageus mother like you... All the best for you both...