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ctrain1124
Our Gang!
Member since 8/07 3190 total posts
Name:
C
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Re: Baby Easton needs all of our prayers
Posted by 2BadSoSad
Posted by sometimesmommy
I pray for a miracle but I also pray for him to pass on and be pain free if that is what his life will be. It breaks my heart every time I log in and see an update. No child should have to suffer like that. He draws you in and you just want to love on him and kiss him. Life just isnt fair :(
This is how I feel, as well.
Me too. I am so sickly saddened for this sweet boy and his family.
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Posted 9/12/12 2:13 PM  |
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Long Island Weddings
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JenMarie
One day at a time
Member since 11/07 7397 total posts
Name:
Jennifer
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Re: Baby Easton needs all of our prayers
Posted by maybebaby
Posted by JenniferEver
Posted by lynnd126
I've been following this all too. Heartbreaking. I understand for the most part about his disease but one thing I'm not clear on- is it possible for him to get past this really touch and go period and recover to some extent? I know there is no cure, but also talks of treatments, so I was just curious.
I think for the most part, these babies don't live to be 1 year old. On the indiegogo site they posted the blog of a mom who lost her precious angel at about age 3. I think I have read that mild forms can improve with age, but I think it's safe to say that as long as Easton lives, he'll need this level of constant, intense care.
Maybe someone with more info can chime in.
I think you're prob right. From what i have read, he just has a very severe form of this disease..the risk of infection at any time is just so high because of exposure.
It's heartbreaking to read about. I've been checking for updates on him since I've known about it, and it makes me so upset. No child should ever have to endure that kind of pain and the amount of procedures he's already had to go through...
That's my understanding as well - all depends on the type of EB. They think Easton has the worst kind (junctional or something like that?), but biopsy results haven't confirmed it yet - sometime this week I think. It's infection that's the problem. An update last night said the infection he has was in his heart.
I can not fathom what this family is going through. I don't know them, or Easton, but I am checking Facebook constantly for updates...even in the middle of the night when I wake up. I just keep praying for positive updates.
If ever someone were born to serve a purpose, it was Easton. He has changed the lives of so many people. When my DD is pulling clothes out of drawers as I'm trying to put them away, emptying cabinets, making a mess, I can't help now but think at least she CAN do these things. I hug her tighter and have such a stronger appreciation for the simple things. Just the fact that I CAN kiss her or hug her without fear is a blessing now, where before it was something I might have taken for granted.
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| Posted 9/12/12 2:45 PM |
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Purplegirl77
i love my kids!
Member since 1/09 1963 total posts
Name:
Debbie
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Re: Baby Easton needs all of our prayers
I agree with u all. I am sick over this. Poor baby & family. I have a 3 yr old dd & 5 month old ds & I can't even imagine the pain this baby & family is going through. Poor big brothers :(. Is there a Long Island fundraiser???
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| Posted 9/12/12 11:23 PM |
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NK926
LIF Adult
Member since 6/05 1140 total posts
Name:
Natalie
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Re: Baby Easton needs all of our prayers
Two very sad updates on Facebook...this poor, innocent baby. No one should ever have to suffer like this.
Message edited 9/13/2012 7:01:00 PM.
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| Posted 9/13/12 7:00 PM |
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ttcc
LIF Toddler
Member since 7/09 453 total posts
Name:
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Baby Easton needs all of our prayers
I don't understand how this can happen to a baby.
It is beyond heartbreaking. I cry every time I read
an update.
While I would love to see Easton have a miraculous
recovery, I just hope he does not have to deal with
This pain for too much longer. It's just not fair.
Message edited 9/13/2012 7:26:06 PM.
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| Posted 9/13/12 7:24 PM |
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Lina
My angel is finally here
Member since 5/10 2559 total posts
Name:
Lindsay
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Re: Baby Easton needs all of our prayers
Posted by Purplegirl77
I agree with u all. I am sick over this. Poor baby & family. I have a 3 yr old dd & 5 month old ds & I can't even imagine the pain this baby & family is going through. Poor big brothers :(. Is there a Long Island fundraiser???
They are doing one at the end of October, it's $100 pp. I know a lot of people might not be able to afford it so I really want to plan a different type of event. One that would be less pp and then give people the option to donate more if they want by enter raffles, 50/50, silent auction. Do you guys think people would go to that one even though they are doing another one? I already have a place lined up, I would just need to get the date settled and I would like approval from the family. Everyone's thoughts on this would be appreciated.
Message edited 9/13/2012 8:39:36 PM.
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| Posted 9/13/12 8:38 PM |
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Kidsaplenty
Sister love
Member since 2/06 5971 total posts
Name:
Stephanie
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Re: Baby Easton needs all of our prayers
No one should have to suffer the way Easton has. Seeing his updates breaks my heart, I just hope he can be pain free soon. Seeing that he is having painful episodes while on one of the strongest pain medications is just too much.
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| Posted 9/13/12 9:53 PM |
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MrsA1012
love my little girl !
Member since 9/10 5777 total posts
Name:
Me
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Re: Baby Easton needs all of our prayers
I agree. I couldn't bear to watch that poor, innocent child suffer. In this type of situation, a peaceful death would be preferable to that kind of pain Poor,little baby.
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| Posted 9/13/12 10:14 PM |
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seaside
LIF Adult
Member since 6/08 3101 total posts
Name:
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Re: Baby Easton needs all of our prayers
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| Posted 9/13/12 11:03 PM |
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Purplegirl77
i love my kids!
Member since 1/09 1963 total posts
Name:
Debbie
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Re: Baby Easton needs all of our prayers
Posted by Lina
Posted by Purplegirl77
I agree with u all. I am sick over this. Poor baby & family. I have a 3 yr old dd & 5 month old ds & I can't even imagine the pain this baby & family is going through. Poor big brothers :(. Is there a Long Island fundraiser???
They are doing one at the end of October, it's $100 pp. I know a lot of people might not be able to afford it so I really want to plan a different type of event. One that would be less pp and then give people the option to donate more if they want by enter raffles, 50/50, silent auction. Do you guys think people would go to that one even though they are doing another
one? I already have a place lined up, I would just need to get the date settled and I would like approval from the family. Everyone's thoughts on this would be appreciated.
That would be great!!!!!
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| Posted 9/13/12 11:12 PM |
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JenniferEver
The Disney Lady
Member since 5/05 18163 total posts
Name:
Jennifer
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Re: Baby Easton needs all of our prayers
Posted by Lina
Posted by Purplegirl77
I agree with u all. I am sick over this. Poor baby & family. I have a 3 yr old dd & 5 month old ds & I can't even imagine the pain this baby & family is going through. Poor big brothers :(. Is there a Long Island fundraiser???
They are doing one at the end of October, it's $100 pp. I know a lot of people might not be able to afford it so I really want to plan a different type of event. One that would be less pp and then give people the option to donate more if they want by enter raffles, 50/50, silent auction. Do you guys think people would go to that one even though they are doing another one? I already have a place lined up, I would just need to get the date settled and I would like approval from the family. Everyone's thoughts on this would be appreciated.
I would definitely be interested.
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| Posted 9/14/12 1:39 AM |
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Lina
My angel is finally here
Member since 5/10 2559 total posts
Name:
Lindsay
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Baby Easton needs all of our prayers
Awesome! Once I have the date and major details nailed down I will let everyone know. If anyone wants to help plan and organize donations I would love the help, just FM me your email and we can connect more easily that way.
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| Posted 9/14/12 9:17 AM |
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JenniferEver
The Disney Lady
Member since 5/05 18163 total posts
Name:
Jennifer
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Re: Baby Easton needs all of our prayers
Praise God!
i know from photos that there is nothing "mild" about it, but Easton was diagnosed with the "mildest" form of EB, not the deadly junctional type.
Keep praying!!!
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| Posted 9/14/12 3:54 PM |
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NK926
LIF Adult
Member since 6/05 1140 total posts
Name:
Natalie
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Re: Baby Easton needs all of our prayers
Posted by JenniferEver
Praise God!
i know from photos that there is nothing "mild" about it, but Easton was diagnosed with the "mildest" form of EB, not the deadly junctional type.
Keep praying!!!
ITA! At least it's some positive news!
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| Posted 9/14/12 10:14 PM |
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