Raise Up For Riley

$3,870 of $10k goal

Raised by 70 people in 16 months
Jason Wages  FORSYTH, MO
Hi my name is Jason and Riley is my 9 year old son. Thank you for taking the time to hear his story.

Riley was admitted to a children’s hospital 3 ½ hours away from our home on 11/5/15.  His kidneys became severely inflamed and caused them to work at less than 10 percent. After some testing, Riley was diagnosed with C3 nephropathy or C3 glomerulonephritis which affects about 2 in one million people. This disease will continue to cause inflammation to his kidneys and will result in Chronic  kidney failure. 

This is a fairly new disease and so options are limited at this time.  For now Riley will be on steroids to help with the inflammation and hopefully get his kidneys functioning again. There is also one medication to try which will hopefully slow the progression, but there are not much findings or studies on it.  Eventually Riley will have to go on dialysis and then kidney transplantation.

Your donation will help with so much. We live about 3 ½ hours away from the pediatric hospital, and the cost of traveling back and forth for work is adding up.  On top of everything happening with Riley, his mother, Liz, is fighting her own battle with a separate kidney disease which has caused renal failure. She requires dialysis 3-5 times a week at a hospital closer to their home. Your donation will also help provide support with medical bills and living expenses, which will allow more time for us to be by Riley’s side.

Riley is a regular kid who loves to play football and watch Minecraft videos. He is such an awesome kid and a joy to be around.  He is only 9 years old and is already having to struggle with this terrible disease, when he should be laughing and playing with his friends.

Thank you for your donations, prayers, positive thoughts, and shares of his story.
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Update 29
Posted by Jason Wages
12 months ago
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A quick update on Liz and Riley. Riley has been in the PICU since Thursday of last week and we are not sure when he will be home. The blood clots are looking better and the one in the main vein to his heart looks to be getting smaller. He has developed a sever pain in his left kidney and they are not sure what it is. He is so ready to come home again. I believe this is the 6th time being admitted. Liz is worn out tired scared just a little bit of everything. Her nerves have been bothering her very bad. When she gets home they want to check her parathyroid gland to see if that is the problem. If it is they will have to remove it. This will leave a 3inch scar on her throat. We are NOT wanting this. Please Pray. Her left fistula seems to be working good right now so please pray it keeps running good.
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Update 28
Posted by Jason Wages
12 months ago
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Hello everyone I wanted to give some Updates and some information for everyone. Mr. Riley is doing great. He is back at school 2 days a week doing half days. He went to baseball camp yesterday and gave it his best. It wore him out. We have had a lot of questions about donating a kidney. There is a lot to this and me and Liz can't answer most questions. Here is the phone number for information about donating to Riley 573-882-9974. Contact these amazing people and they will let you know what can be done. I know this was created for Riley but I want to talk about his mother. Liz has been sick for a long time. We are going on 8 years of dialysis. Her nervous system is taking a beating right now. There are days she cannot control her hands or legs. She is physically and emotionally exhausted. I am watching her slowly get worse. Her memory is getting worse and she is having more and more issues with her fistula. A fistula is where she uses a 15 gauge needle to do dialysis every day and they are beginning to clot off. She will have to have another port put in her neck for the 8th time. Please share this PLEASE help me get this to the right people. Please help give her an opportunity to be Riley’s mom and help him through this. Her transplant team number is 913-588-1227. Please share and help this go viral.
Blood match chart. Liz- A+ Rye A-
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Update 27
Posted by Jason Wages
14 months ago
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Hello Everyone! I wanted to start by saying thank you! Thank you Everyone who has stepped up to the plate to help me and my family. I never thought so many people cared and were willing to help. I cannot express to you all how much appreciation I have for the help. Riley is doing better. His numbers are coming down. I understand it is hard to understand what I mean sometimes, but there is just so much to explain to help you all make sense of it. An example, A healthy kidney's creatinine level should be around .5 to 1, Riley's reached 10. The BUN in a child should range from 6-25 and his reached 95. All of this determines how the kidney is functioning. Since he has started Dialysis all of those numbers have came down. This doesn't mean his kidneys are working, it just means that he is becoming healthier. We talk about his fluid levels and how much water he is retaining. An example of how much is on his little body. Get a 5 gallon bucket of water and fill it to the top. It will weigh right at 40lbs. Riley is about 30-35lbs overweight with just water. For men and boys, this can be very rough. Your genitals are called a soft tissue. Extra water will find soft tissues first. I will not post a picture of Riley's, but his boys are the size of a Honeydew or a Cantaloupe. This makes it very hard for him to do really anything. Right now he is stuck in his bed. He gets up maybe once a day to use the restroom. They are using leg compression wraps to keep the blood flowing. With kidney patients blood clots can be common. As a father to my son and a husband I cannot being to tell you how this has been mentally. My brain is a bit messy right now. I have a hard time keeping track of time and days. I come home to work and I sit down in this quiet house and I think that's the hardest. I don't get to hear Riley Saying DAD! I don't here Liz Saying BABE! My house stays clean. I sometimes feel I hear them say something and I have to look around. It is hard for me to stay in a conversation with anyone right now. I am lost in my own mind and confused and broken. Please Just bare with me. If I don't respond right away it is nothing personal. And again I want to say thank you guys for all the help. You have given my family a chance at life. A way to keep our home and what little normal we have. Again thank you all from the bottom of my heart!
My Family My Friends, Thank You!
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Update 26
Posted by Jason Wages
14 months ago
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1
1
Hello Everyone! I wanted to start by saying thank you! Thank you Everyone who has stepped up to the plate to help me and my family. I never thought so many people cared and were willing to help. I cannot express to you all how much appreciation I have for the help. Riley is doing better. His numbers are coming down. I understand it is hard to understand what I mean sometimes, but there is just so much to explain to help you all make sense of it. An example, A healthy kidney's creatinine level should be around .5 to 1, Riley's reached 10. The BUN in a child should range from 6-25 and his reached 95. All of this determines how the kidney is functioning. Since he has started Dialysis all of those numbers have came down. This doesn't mean his kidneys are working, it just means that he is becoming healthier. We talk about his fluid levels and how much water he is retaining. An example of how much is on his little body. Get a 5 gallon bucket of water and fill it to the top. It will weigh right at 40lbs. Riley is about 30-35lbs overweight with just water. For men and boys, this can be very rough. Your genitals are called a soft tissue. Extra water will find soft tissues first. I will not post a picture of Riley's, but his boys are the size of a Honeydew or a Cantaloupe. This makes it very hard for him to do really anything. Right now he is stuck in his bed. He gets up maybe once a day to use the restroom. They are using leg compression wraps to keep the blood flowing. With kidney patients blood clots can be common. As a father to my son and a husband I cannot being to tell you how this has been mentally. My brain is a bit messy right now. I have a hard time keeping track of time and days. I come home to work and I sit down in this quiet house and I think that's the hardest. I don't get to hear Riley Saying DAD! I don't here Liz Saying BABE! My house stays clean. I sometimes feel I hear them say something and I have to look around. It is hard for me to stay in a conversation with anyone right now. I am lost in my own mind and confused and broken. Please Just bare with me. If I don't respond right away it is nothing personal. And again I want to say thank you guys for all the help. You have given my family a chance at life. A way to keep our home and what little normal we have. Again thank you all from the bottom of my heart!
My Life My Family My Friends! Thank You!
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Read a Previous Update
Jessica Ables
12 months ago

Praying for you ALL!!

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Misty Jones
15 months ago

All our prayers go out for Riley - and yes Jason prayers do work - if you really have faith.

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Vi Dao
15 months ago

I hope that your family and your son would be well soon

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Angela Saffle
15 months ago

Are u looking for people wiling to get tested for kidney donors? I'm willing to do that. Contact me if that time comes. Stay strong. Xo

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Brandon Wages
16 months ago

Than you everyone who has shared and donated to help! Our family really appreciates it!

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Sheila Range
16 months ago

Jason OMG I am so sorry. We lost my nephew I told about who was diabetic and also on dialysis, almost 6 months ago now. I can't donate today, but I will tomorrow. Take care, I'm praying for you and your family. My heart goes out to you.

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$3,870 of $10k goal

Raised by 70 people in 16 months
Created November 11, 2015
Jason Wages  
RP
$50
Rebecca Poillion
12 months ago
$150
Chris Battaglia
12 months ago

It was nice meeting you all! Me and my wife are praying for your family!

RR
$10
Renee Rodelo
12 months ago
$100
Patricia Basinger
12 months ago
JA
$50
Jessica Ables
12 months ago
RD
$100
Rick Disney
12 months ago

God bless you and your family, Rick Disney and family from the old Claraday hockey games in CA.

MK
$200
Mary Kuntz
13 months ago

Hey Jason, Liz, and Riley, I know that this doesn't cover everything but I hope that it will help. In my prayers always.

TW
$20
tom wong
14 months ago
DB
$50
Deborah & Robert Baker
14 months ago
LA
$50
Linley Ables
14 months ago

Praying for y'all!

Jessica Ables
12 months ago

Praying for you ALL!!

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Misty Jones
15 months ago

All our prayers go out for Riley - and yes Jason prayers do work - if you really have faith.

+ Read More
Vi Dao
15 months ago

I hope that your family and your son would be well soon

+ Read More
Angela Saffle
15 months ago

Are u looking for people wiling to get tested for kidney donors? I'm willing to do that. Contact me if that time comes. Stay strong. Xo

+ Read More
Brandon Wages
16 months ago

Than you everyone who has shared and donated to help! Our family really appreciates it!

+ Read More
Sheila Range
16 months ago

Jason OMG I am so sorry. We lost my nephew I told about who was diabetic and also on dialysis, almost 6 months ago now. I can't donate today, but I will tomorrow. Take care, I'm praying for you and your family. My heart goes out to you.

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