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Old 06-18-2007, 09:15 AM   #1
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RAK request for 5 year-old with kidney disease

I’d like to make a RAK request for my best friend’s 5 year-old grandson (Liam) and her daughter (Christina - Liam's mom). They have been spending almost every day at the Ronald McDonald House near the St. Louis children's hospital for the last six months because of Liam's kidney disease. He was diagnosed with Focal segmental glomerulosclerosis (FSGS) shortly after his 3rd birthday in February 2005. He turned 5 December 20, 2006.

This is a disorder in the blood-filtering parts of the kidney called the glomeruli. Focal and segmental refer to the pattern of damage to the glomerulus and glomerulosclerosis refers to the damage or scarring (sclerosis) of the glomerulus. Specifically, focal refers to patches within the kidney that are affected and segmental indicates that only a portion of the glomerulus is affected. FSGS damages the glomerulus and allows protein to leak into the urine (proteinuria). Over time, the damage to the kidney may cause kidney failure. FSGS is only one of many causes of kidney failure or end-stage renal disease (ESRD). [Just a short description of the disease]

Liam did have kidney failure and endstage renal disease – which is why he had to have his kidneys removed on May 8th so that they could get the disease out of his body and prepare him for the transplant.

He started hemo-dialysis in February after being on peritoneal dialysis since early December. They had to go to hemo-dialysis because he was having too many complications from the peritoneal dialysis and too many surgeries having to move the catheters around in his body so they would be more effective.

They have done the labs for the transplant process this last week so that if a kidney becomes available and it is a match for him, he will get a new kidney. Unfortunately, the soonest that has ever happened is 5 weeks. But we all know that finding a donor match could take a VERY long time. So there's really no telling how long Liam (and Christina) will have to live in St. Louis - away from most of his family - being poked, prodded and stuck.

Christina and Liam were able to come up to Champaign yesterday for Brenda's wedding rehearsal and will be up for the wedding this coming Saturday. But otherwise, they spend all their time in St. Louis. I saw them yesterday at the rehearsal and thankfully, because of a blood transfusion he’d had a few days earlier, Liam looked and acted like a normal five year-old. He is usually so full of life and just too smart for our own good! I’d really appreciate your help in making their ordeal a little more pleasant.

Their mailing address is:

Ronald McDonald House
West Pine House
Attn: Liam Connor (Christina Thornton)
4381 West Pine Street
St. Louis, MO 63108

Thank you all so very much for your help and support for my dear friends!! I know I can count on you to help brighten their days just a little bit!!

-danita

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Old 06-18-2007, 09:28 AM   #2
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I'll get a card out today... this is so sad!
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Old 06-18-2007, 10:26 AM   #3
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Danita,

I will get a card out ASAP. Let me know if he ever needs a visitor or a break from the RM house!
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Old 06-18-2007, 10:26 AM   #4
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I'll get a card out ASAP! Any clues as to Liam's faves? colors? interests? etc...?
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Old 06-18-2007, 10:34 AM   #5
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Originally Posted by laurakj View Post
I'll get a card out ASAP! Any clues as to Liam's faves? colors? interests? etc...?

I'd like to know, also, please.
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Old 06-18-2007, 10:38 AM   #6
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You ladies are *fabulous*!! I'm working on answers to your thoughtful questions and will post as soon as I have them!
THANK YOU all soooo much!!!!
d
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Old 06-18-2007, 11:34 AM   #7
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I checked with Brenda about Liam's current faves and here's what she says:

Liam’s favorite color is still yellow. Spiderman is still his all-time favorite of anything. Right now pretty much all he’s able to do during the day when he’s on dialysis is to watch movies, color, and whatever art projects they have there in the dialysis unit for him and the other kids. As for animals, he loves stuffed dogs. He also likes turtles, dinosaurs and Power Rangers. He’s 5, that’s the typical things.

Thank you! This is very nice.


Again, I can't thank you ladies enough for your thoughtfulness!!

-danita
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Old 06-18-2007, 12:15 PM   #8
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I'm mailing a card out today!
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Old 06-19-2007, 05:40 AM   #9
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btt
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Old 06-19-2007, 11:25 AM   #10
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Old 06-20-2007, 08:34 AM   #11
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btt
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Old 06-22-2007, 07:55 AM   #12
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Thanks to everyone who is sending cards!! I'm sure Christina and Liam will be pleasantly surprised. I'll see them tomorrow at the wedding and will let you all know how they're doing. Thanks again for your kindness!!!
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Old 06-26-2007, 08:43 AM   #13
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Quick update -
Liam was looking pretty chipper at the wedding this weekend. But he ran down quicker than usual. Poor kid. They're back in St. Louis now of course. I'll let you all know when he gets on the transplant list!
Thanks again for all your support!!!!
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Old 07-10-2007, 04:51 PM   #14
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Talking **THANK YOU**

You ladies are soooooo cool!!! I just chatted with Liam's grandma and it seems he's been getting cards and *presents* (omg!) for a few weeks now! Brenda says he takes his lovely cards to dialysis with him to show everyone there - nurses and patients. He thinks that getting mail with HIS name on it is great!!! And Christina gives the blank cards you send to others who are at RMH. Thank you all soooo much for your kindness and generosity!!

Liam is doing very well right now. He is not yet on the transplant list. They are still waiting on testing results from his lab work with the transplant unit. Christina is hoping that he will get put on soon because he’s so “healthy” right now. This would be the best time for him to be on the list. So keep your fingers crossed or pray or whatever! They can use all the help they can get!!

Again, I can't thank you all enough for your thoughtfulness!!!!
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Old 07-10-2007, 07:43 PM   #15
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Quote:
Originally Posted by MoberKitty View Post
You ladies are soooooo cool!!! I just chatted with Liam's grandma and it seems he's been getting cards and *presents* (omg!) for a few weeks now! Brenda says he takes his lovely cards to dialysis with him to show everyone there - nurses and patients. He thinks that getting mail with HIS name on it is great!!! And Christina gives the blank cards you send to others who are at RMH. Thank you all soooo much for your kindness and generosity!!

Liam is doing very well right now. He is not yet on the transplant list. They are still waiting on testing results from his lab work with the transplant unit. Christina is hoping that he will get put on soon because he’s so “healthy” right now. This would be the best time for him to be on the list. So keep your fingers crossed or pray or whatever! They can use all the help they can get!!

Again, I can't thank you all enough for your thoughtfulness!!!!
Thanks for the oh-so-wonderful update! Keeping my fingers and toes crossed, as well as my prayers for Liam and his family!
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Old 07-19-2007, 05:10 AM   #16
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Thanks for the posting! I will try and get another one out in the mail again soon, so he keeps getting mail!
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