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NC-BILLS44
12-17-2003, 02:59 PM
My Godson, Everett, is getting close to the end. He is to turn 4 on the 27th, but it doesn'l look as if he'll make it. His parents are strong and doing their best to keep him comfortable. I visited him on Monday and he slept quietly most of the time.

He has Zellweger syndrome, a disorder similar to Krabbe Disease, like Hunter Kelly. On Saturday, his Hospice nurse thought he only had a few days left. As of this morning, he continues to sleep, most of the time peacefully. He drinks only a few ounce of formula a day and continues to get thinner and thinner. Please pray for this Angel to have peace.

Thanks,
Scott



Zellweger syndrome is a rare, congenital disorder characterized by the reduction or absence of peroxisomes (cell structures that rid the body of toxic substances) in the cells of the liver, kidneys, and brain. Zellweger syndrome, like Krabbe Disease, is one of a group of genetic disorders called the leukodystrophies that affect growth of the myelin sheath, the fatty covering--which acts as an insulator--on nerve fibers in the brain. The most common features of Zellweger syndrome include an enlarged liver, high levels of iron and copper in the blood, and vision disturbances. Some affected infants may show prenatal growth failure. Symptoms at birth may include lack of muscle tone and an inability to move. Other symptoms may include unusual facial characteristics, mental ******ation, seizures, and an inability to suck and/or swallow. Jaundice and gastrointestinal bleeding may also occur. There is no cure for Zellweger syndrome, nor is there a standard course of treatment. Infections should be guarded against to prevent such complications as pneumonia and respiratory distress. Other treatment is symptomatic and supportive. The prognosis for individuals with Zellweger syndrome is poor. Death usually occurs within 6 months after onset, and may be caused by respiratory distress, gastrointestinal bleeding, or liver failure.
TheWingHead
12-17-2003, 03:03 PM
Will Do. God bless.
Ebenezer
12-17-2003, 03:13 PM
Peroxisomes are essential to life...sorry to hear about this brave little fighter...

:pray:
justasportsfan
12-17-2003, 03:14 PM
God Bless His little angels.

You have my prayers.
Valerie
12-17-2003, 03:19 PM
God bless, Everett.:pray: It's so sad to hear of such a little child being this sick. :( I'll pray for all of you.

God will have another little angel! I'm so very sorry. :(
Pride
12-17-2003, 03:29 PM
Awww... sorry to hear this....

my thoughts are with him...
cordog
12-17-2003, 03:30 PM
God Bless. I will be praying for him.
DolphinDevil28
12-17-2003, 03:33 PM
That is horrible, NC. Sorry to hear that.

I hope God takes him home and takes care of him.
NC-BILLS44
12-17-2003, 03:36 PM
Thank you all for your thoughts and prayers.
Thailog80
12-17-2003, 03:58 PM
God bless him and you.
LtBillsFan66
12-17-2003, 04:00 PM
Sorry to hear it. I'll say a prayer for you, the little guy and your family.
Billsbabee
12-17-2003, 04:38 PM
God Bless little angel Everett, you and his family. May he go in peace.
Bufftp
12-17-2003, 04:39 PM
I'll be prayin for Everrette, his family and you.
don137
12-17-2003, 04:40 PM
I am very sorry to hear that NC...God bless him and give the family strength.
shelby
12-17-2003, 05:06 PM
My deepest condolences....prayers for you and your family...Everett will be in a safe place where there is no pain.
:pray:
DraftBoy
12-17-2003, 05:18 PM
May god watch over him, you and your family
helmetguy
12-17-2003, 05:31 PM
God bless you and your godson. My thoughts and prayers are with you.
TigerJ
12-17-2003, 05:37 PM
I knew a young couple years ago with an infant daughter that had a congenital disorder, Werdnig-Hoffman Syndrome. I officiated the baby's funeral at age 6 months. It was very sad , but the family and I experienced God's presence in those difficult days. I pray that Everett, you and the family will experience the same.
AG75
12-17-2003, 05:46 PM
This is heartbreaking. He is in my thoughts and prayers.
Billsouth
12-17-2003, 06:42 PM
u have my prayers. nc i am also in nc and if there is anything i can do please do not hesitate to ask.

as the bible says he will walk where the streets r paved with gold.

God bless u and ur family.
ryguy8161
12-17-2003, 08:09 PM
He'll be in my thoughts and prayers as well. Sorry...:(
lunatic_bills_fan
12-17-2003, 08:09 PM
God Bless, some things just arent fair.
Dozerdog
12-17-2003, 08:39 PM
Originally posted by shelby
My deepest condolences....prayers for you and your family...Everett will be in a safe place where there is no pain.
:pray:

My deepest sympathies to your godson.
baalworship
12-17-2003, 08:55 PM
I definitely hope your godson is taken care of and I hope he and his family have one moment this Christmas that takes them briefly away from their suffering.


This sure makes GW, Bledsoe, and the Bills seem unimportant. Thanks for the brief jolt of reality. Merry Christmas to you NCBills44.
kill4bills
12-18-2003, 04:03 AM
im sorry to hear this and best believe i will be praying god bless you
Jan Reimers
12-18-2003, 06:52 AM
Our hearts go out to you, Everett and his family. We will pray that he goes comfortably and in peace. He will soon be in a far better place.
carybillsfan
12-18-2003, 07:49 AM
God bless all of you, sorry to hear the news NC.
Rude American
12-18-2003, 08:06 AM
:pray:
NC-BILLS44
12-18-2003, 08:51 AM
May God bless you all for taking the time to care.
TedMock
12-18-2003, 09:58 AM
God Bless. We'll pray for you and your family.
KRC
12-18-2003, 10:21 AM
Originally posted by NC-BILLS44
My Godson, Everett, is getting close to the end. He is to turn 4 on the 27th, but it doesn'l look as if he'll make it. His parents are strong and doing their best to keep him comfortable. I visited him on Monday and he slept quietly most of the time.



My thoughts and prayers are with you, your Godson Everett, and the entire family.
SABURZFAN
12-18-2003, 02:00 PM
this is horrible news.i hate to hear about children having these kind of things.i'm very sorry for what your godson is going through.
Kolbiss
12-18-2003, 02:05 PM
Originally posted by NC-BILLS44
My Godson, Everett, is getting close to the end. He is to turn 4 on the 27th, but it doesn'l look as if he'll make it. His parents are strong and doing their best to keep him comfortable. I visited him on Monday and he slept quietly most of the time.

He has Zellweger syndrome, a disorder similar to Krabbe Disease, like Hunter Kelly. On Saturday, his Hospice nurse thought he only had a few days left. As of this morning, he continues to sleep, most of the time peacefully. He drinks only a few ounce of formula a day and continues to get thinner and thinner. Please pray for this Angel to have peace.

Thanks,
Scott



Zellweger syndrome is a rare, congenital disorder characterized by the reduction or absence of peroxisomes (cell structures that rid the body of toxic substances) in the cells of the liver, kidneys, and brain. Zellweger syndrome, like Krabbe Disease, is one of a group of genetic disorders called the leukodystrophies that affect growth of the myelin sheath, the fatty covering--which acts as an insulator--on nerve fibers in the brain. The most common features of Zellweger syndrome include an enlarged liver, high levels of iron and copper in the blood, and vision disturbances. Some affected infants may show prenatal growth failure. Symptoms at birth may include lack of muscle tone and an inability to move. Other symptoms may include unusual facial characteristics, mental ******ation, seizures, and an inability to suck and/or swallow. Jaundice and gastrointestinal bleeding may also occur. There is no cure for Zellweger syndrome, nor is there a standard course of treatment. Infections should be guarded against to prevent such complications as pneumonia and respiratory distress. Other treatment is symptomatic and supportive. The prognosis for individuals with Zellweger syndrome is poor. Death usually occurs within 6 months after onset, and may be caused by respiratory distress, gastrointestinal bleeding, or liver failure.

You have Prayers from CDA Idaho
Devin
12-18-2003, 03:13 PM
God Bless, he is in my thoughts and prayers.
Bert102176
12-18-2003, 11:05 PM
my thoughts and prayers go out to him, you and his family
The_Philster
12-19-2003, 03:01 AM
:pray: ing for him now
Cntrygal
12-19-2003, 03:25 AM
:pray:


:(
mybills
12-19-2003, 06:47 AM
My deepest sorrow for you & your family. My thoughts & prayers are with all of you. Stay strong, his love will always be with you.
NC-BILLS44
12-19-2003, 07:59 AM
Meet Everett.
Valerie
12-19-2003, 11:25 AM
What a beautiful little boy, NC-Bills. God will take good care of him.
SABURZFAN
12-19-2003, 12:46 PM
that's a great picture.a true Hall of Famer.
Gunzlingr
12-19-2003, 03:56 PM
:pray:
mchurchfie
12-19-2003, 04:10 PM
Prayers and thoughts go out to your Godson and family NC...that picture of him is precious:pray:
NC-BILLS44
12-19-2003, 04:12 PM
Originally posted by mchurchfie
Prayers and thoughts go out to your Godson and family NC...that picture of him is precious:pray:

That's their family Christmas card.
Demon
12-19-2003, 11:37 PM
Very sorry to hear this, NC.

I will be praying for him.

God bless.
LarryBoy
12-20-2003, 09:28 AM
I don't know what to say, there are no words to describe my sadness.....my prayers are with you all.
bigbry
12-20-2003, 12:54 PM
:pray: :pray: :pray:
Sabre Ally
12-20-2003, 01:20 PM
:pray:
Ebenezer
12-20-2003, 01:37 PM
Any update??
stuckincincy
12-20-2003, 02:43 PM
God will take care forever.
NC-BILLS44
12-20-2003, 04:02 PM
Originally posted by Ebenezer
Any update??


Everett continues to hold on and is sleeping peacefully most of the day. That was as of this morning. At least, he is comfortable.

I will continue to update periodically.:angel:
SABURZFAN
12-21-2003, 06:15 AM
i hate it when children are sick like this.:mad:

it makes me sad.:sadwalk:
honey
12-21-2003, 09:10 AM
:pray: I'm so sorry to hear about this. God Bless.
Topdog
12-21-2003, 09:54 AM
This is very Heart wrenching NC, rest assured that the good Lord will reach down gently take him home where he will find peace without pain everlasting. Our prayers go out to you, Everett and his family.
Nighthawk
12-21-2003, 01:46 PM
My prayers our with him and your family.
NC-BILLS44
12-22-2003, 08:24 AM
I visited Everett yesterday and he was able to drink a little before sleeping the rest of the afternoon. I'm not sure how he is holding on. Maybe he's waiting until after Christmas and his birthday.
Cntrygal
12-22-2003, 06:31 PM
That's great that he was able to take in a little fluid. Is he on an IV?

:pray:
shelby
12-22-2003, 07:47 PM
He is a beautiful boy.
:pray:
Voltron
12-22-2003, 10:37 PM
This is just Gut Wrenching :(.
:shakeno: I can't imagine a worst way to spend this time of year.
I sure hope you all are ok. I also hope that in the future you all remember the good times in the past when this time of year comes around, and not the one year that was the worst one of your lives. My heart and my prayers go out to you and your family. May God bless you and keep you during this trying time. Remeber that God has a special place in His kingdom for children. He will be taken care of by his family in heaven.

:pray:
Turf
12-22-2003, 10:41 PM
I pray to God your Godson is taken care of. That is my very prayer.
Mr. Cynical
12-22-2003, 11:23 PM
Sorry to hear about such a sad situation. They have my sincerest condolences.
NC-BILLS44
12-24-2003, 08:02 AM
Originally posted by Cntrygal
That's great that he was able to take in a little fluid. Is he on an IV?

:pray:

He is not on an IV. He is a DNR (Do Not Recessitate(sp)). No extra, or invasive measures will be taken to prolong his life. He is under hospice care now. They will continue keep him as comfortable as possible.