Aid for an Angel
Donation protected
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
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
Organizer
Lisa Ann
Organizer
Tampa, FL
