Aid for an Angel

$1,445 of $50,000 goal

Raised by 27 people in 26 months
Angel Raye B was born on 5-7-04. She was born with VATER Syndrome. This is a complicated sydrome that affects many areas of your body. For Angel it affected her Heart, Kidney's Stomach, Bowels and her Back. She was born with a Tethered spinal cord and a lot of her issues mimic Spina Bifida. Although her exact diagnosis is End Stage Renal Failure, Tethered Spinal cord, Severe Scolosis, WPW Heart condition, failure to thrive,Gastroparesis, no bladder and some other issues that have since been surgically corrected.
Since Angel's birth she has had 3 Spinal Cord surgeries to release her tethered spinal cord.
She has had 1 Spinal fusion T1-T12.
She Had a Colostomy, a Reversal of her Colostomy and many reconstruction surgeries and procedures. 
She has had 8 years of HemoDialysis. She has had two Kidney Transplants. One resulting in a failed transplant that left her in the ICU for almost 9 weeks fighting for her life. 
She has removal of the transplanted kidney and after her most recent transplant which is coming up on 2 years this week, her native kidney became severely infected causing weeks of being hospitalized with incredible pain, IV Antiobiotics and eventually it was surgically removed.
With all of her health always being in the balance it has been very difficult to stay on top of finances. 
3 years ago My husband and Angels father passed away from Brain Cancer. It was a horrible ordeal and Angel, her brother and sister and myself. My oldest Daughter is on her own now and my Son is almost done with high school. 
When Angel received her Transplanted Kidney it came with a virus called the BK virus. It would not normally affect a healthy person but for transplant patients it can be very dangerous. Angel was treated for a very long time with medication but we have found out with or without the medication the virus is still there. The virus caused the urerter that would normally attach from the Kidney to the Bladder to have issues, see Angel has no bladder so her Ureter was brough up to the skin and she has a UreterOstomy which means she drains urine into a bag. The BK caused the urerter to close off and cause urine to back up into the kidney. This caused her needed a stent placed and many infections. The stent helps and hurts at the same time. There are several surgeries we are working on now to see the best way to correct this. Angel can no longer fight off these infections with oral antibiotics and we are struggling going back and forth to the hospital daily for IV antibiotics.
Hopefully we figure out her next surgeries and Angel can have a healthier future.
Several years ago I had knee surgeries on both of my knees. They have never recovered and eventually they will need to be replaced. I also have some other health issues so between Angels health and my own, work has been just about impossible. (not for lack of trying though) 
In April I was not able to renew our lease in the low income apartments we were living in as I could not afford the rent. We had to put our stuff in storage and we have been staying with family. It is difficult to lose our independence but we are hoping after Angels urological surgeries we may have less health issue and I can start working on getting my knees fixed which will of course allow me to be much more productive.


















I will add updates when we figure out this next surgery or two and hopefully we can see some brighter futures.
If you can donate Thank you and if you can't please share our story it may just make all the difference.

#kidney
#kidneydisease
#organdonation
#chronicillness
#needhelp
#Vater
#vatersyndrome
#vacterl
#scoliosis
#tetheredcord
#GoFundMe
#TeamAngel
#Transplant
#CMV
#EBV
#BKVirus
#Angelsstory
#Gastroparesis
#help
#rarediseases 
#chronicillness
#teamangel
#urology
#transplantcomplications

#aidforangel
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Angel is finally scheduled for her Urology surgery. She will go in the end of February.
The surgeon has informed us that doing this surgery should make a big difference in the infections she has been having and should not interfere with anything groundbreaking that could happen as medicine advances. As of now Angel has a Urerterostomy. This means that the ureter that normally goes between the kidney and the bladder, is brought up to her skin and she has an ostomy bag to collect urine. Angel does not have a bladder and at this time it is far to risky with her complicated anatomy to attempt to build her a bladder or a something that would act as a bladder.
Her current situation is that ureter has narrowed from her BK Virus and it cause a lot of damage to that area, requiring a stent to keep it open. This causes her to have a lot of infections that can no longer be treated with oral antibiotics. One or two times a week we go to the hospital for IV meds.
After this surgery she will have many weeks of recovery. They are expecting surgery to be about 12 hours long and she will be in the hospital at least 10 days or so.
I haven't really mentioned this much but we have had to move in with family several months ago because we simply could no longer make it on our own .Between me needing both of my knees replaced and Angel's medical needs I have not been able to work. We have been living on Angels SSI which covers our storage and gas and some debt I have been working very hard to pay off. We hate to ask but truly anything helps. Any amount of help we could get would make a very big difference and as we get back on our feet one day, we will continue to help others as we have received help.
Thank you for your continued best wishes and please continue to share and donate to our situation.
With much love
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It's been a few days since Angels stomach surgery. We just took off her dressing and it's healing nicely. She goes back next week for suture removal.
We are awaiting an appointment with A general Surgeon and then her big surgery will be scheduled hoping this will be the answer to these infections.
And hoping to see some hope for our future.
Thank you all for donating to help us and for sharing Angels story. We appreciate your support as things are pretty difficult right now
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Tomorrow morning Angel has stomach surgery at 11 hopefully this will go smoothly and not to much pain.
Earlier in the week she had her appt with Urology and we found out the details will be a lot of scheduling as it will require 2 urologist and 1 general surgeon. This will be a 12 hour surgery and she is expected to be inpatient at least 10 days. Hopefully this will fix the problems she is having now with the infections.
It has been rough these past few years and since we are staying with family it is so hard not having our independence. Hopefully things will start looking up soon

Thank you again for your love and support. We truly need and appreciate it. Please continue to share Angels story.
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Angel has had a busy week. She finished up her school exams. She had another successful stent exchange in her transplanted kidney. We confirmed stomach surgery for 12/29 to repair her leaky belly from her Gtube site not healing. We go on Tuesday to Urology and we are likely scheduling her Urology surgery. This is a much bigger procedure which comes with a lot of risk. Without it she will continue getting infections that will either start causing serious damage to "Stevie" her transplanted Kidney or worse yet a blood infection. So this is important and big so we need to be certain that the surgical plan makes sense. And we also need to verify our comfort level with the surgeon.
Thank you for all your support and love. Our lives have been very difficult these past for years but we keep pushing forward and hope things turn around for us soon. Please keep Angel in your thoughts these coming few months and please continue to support and share Angels story.
#teamangel
#vater
#kidneydisease
#esrd
#rarediseases
#charity
#help
#urology
#surgery
#homeless
#transplant
#aidforanangel
#medicalassistance
#organdonation
#inspire
#strength
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Read a Previous Update
Lisa Ann
26 months ago
1
1

Thank you Kel

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Dylan Johnson
11 months ago

Praying for your wonderful family!!! I cannot begin to imagine how hard this has been on Angel or on you or your other children, but I am so thankful that she has come so far. God has sustained her and already given her so much healing it seems!! Jesus Christ is our ultimate Healer (Matthew 8:17) and is there not only for Angel, but also for you to go to in times of anxiousness (Philippians 4:6-7). He will meet every one of your needs according to the riches of His glory (Philippians 4:19).

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$1,445 of $50,000 goal

Raised by 27 people in 26 months
Created October 13, 2016
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$10
Anonymous
22 months ago
1
1
$25
Catherine Boney
22 months ago

We love you all! Keep smiling sweet Angel

$50
Anonymous
22 months ago
MG
$100
Michael Grassullo
22 months ago

Have Fun in Orlando...Enjoy yourself Angel

Lisa Ann
26 months ago
1
1

Thank you Kel

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Dylan Johnson
11 months ago

Praying for your wonderful family!!! I cannot begin to imagine how hard this has been on Angel or on you or your other children, but I am so thankful that she has come so far. God has sustained her and already given her so much healing it seems!! Jesus Christ is our ultimate Healer (Matthew 8:17) and is there not only for Angel, but also for you to go to in times of anxiousness (Philippians 4:6-7). He will meet every one of your needs according to the riches of His glory (Philippians 4:19).

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