Noble Goal, Help Fund the Nobleses' Surgeries!
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My younger sister, Holly Nobles, and her husband, Shannon Nobles, both need spinal fusion surgery and he also needs surgery on his kidney, all out of state!
Holly and Shannon Nobles have had a life full of hospitals and surgeries. Collectively, they have had over 30 surgeries to correct or manage birth defects. Needless to say, it's been a tough road for them and their families.
They met online on a message board support group for people affected by VACTERL nearly 15 years ago. They bonded over a history of a life in and out of hospitals and a shared quirky humor.
After a long online friendship, they decided to meet in person and ended up falling in love. They have been married for 3 years now.
Although both have had medical issues, they'd been relatively healthy for years, with only minor health issues once in a while, until recently.
Both Shannon and Holly were born with a rare disease, known as VACTERL. "VACTERL stands for vertebral defects, anal atresia, cardiac defects, tracheo-esophageal fistula, renal anomalies, and limb abnormalities. People diagnosed with VACTERL association typically have at least three of these characteristic features," according to the National Institute of Health https://ghr.nlm.nih.gov/condition/vacterl-association#diagnosis
Holly was born with vertebral deformities that have worsened over her lifetime. She has kyphoscoliosis, which means her spine is curved side to side AND out and in.
She had spinal fusion surgeries performed in 2007, which turned out to be unsuccessful.
Vertebra in the middle of her back that were supposed to be fused weren't and have caused too much movement in her spine, leading to broken rods. She has put off surgery for years and her rods have been slowly shifting... She cannot put it off any longer.
Holly's seen many doctors and the closest surgeon willing to help her is in New York City. Her surgery is scheduled for April 1st and all of the pre-op visits have already drained the couple's savings.
Shannon has dealt with kidney issues his entire life. After coming home from a medical conference last summer, things didn't quite seem right. So, he went to the doctor.
He was diagnosed with hydronephrosis, which requires surgery to correct. And recently, while he was meeting with Holly's doctor, he found out that his scoliosis had progressed to the point where he also needs spinal fusion surgery.
(This picture is 10 years old, the new pictures are worse.)
He has opted to put off his surgeries until after Holly has healed enough to go back to work, but will be scheduling them this year.
With three surgeries in the near future, their travel, stay, and medical bills are piling up.
Our parents do not travel well anymore and cannot help financially, so my husband and I are doing all we can to help. We can only do so much. Holly will need to stay in New York for about a month after her surgery before she is ready to travel home.
Shannon cannot stay to help Holly through her recovery and must return home to work shortly after her surgery, so I have dedicated my time to her recovery and will stay with her through the whole month.
My husband's family will be banding around him in my absence to care for our three children while mom takes care of Aunt Holly.
Unfortunately, we cannot offer much in the way of monetary help.
That's why we need you!
There is not a lot known about why people are born with VACTERL, but it usually requires many surgeries and long-term management. It is rare — many family doctors have not even heard of it. And it is hard to find doctors who know how to treat the issues that can occur with it.
All three of these surgeries are out of state and require expensive travel and housing. They'll have to get these procedures done with unpaid time off from work.
Holly and Shannon need help to keep their independence and be able to thrive through this rough time.
We appreciate anything you can give, even sharing their story on Facebook and other social media sites helps! When sharing, please use #Noblessurgeries so we can track how far this goes!
We all thank you from the bottom of our hearts!
Holly and Shannon Nobles have had a life full of hospitals and surgeries. Collectively, they have had over 30 surgeries to correct or manage birth defects. Needless to say, it's been a tough road for them and their families.
They met online on a message board support group for people affected by VACTERL nearly 15 years ago. They bonded over a history of a life in and out of hospitals and a shared quirky humor.
After a long online friendship, they decided to meet in person and ended up falling in love. They have been married for 3 years now.
Although both have had medical issues, they'd been relatively healthy for years, with only minor health issues once in a while, until recently.
Both Shannon and Holly were born with a rare disease, known as VACTERL. "VACTERL stands for vertebral defects, anal atresia, cardiac defects, tracheo-esophageal fistula, renal anomalies, and limb abnormalities. People diagnosed with VACTERL association typically have at least three of these characteristic features," according to the National Institute of Health https://ghr.nlm.nih.gov/condition/vacterl-association#diagnosis
Holly was born with vertebral deformities that have worsened over her lifetime. She has kyphoscoliosis, which means her spine is curved side to side AND out and in.
She had spinal fusion surgeries performed in 2007, which turned out to be unsuccessful.
Vertebra in the middle of her back that were supposed to be fused weren't and have caused too much movement in her spine, leading to broken rods. She has put off surgery for years and her rods have been slowly shifting... She cannot put it off any longer.
Holly's seen many doctors and the closest surgeon willing to help her is in New York City. Her surgery is scheduled for April 1st and all of the pre-op visits have already drained the couple's savings.
Shannon has dealt with kidney issues his entire life. After coming home from a medical conference last summer, things didn't quite seem right. So, he went to the doctor.
He was diagnosed with hydronephrosis, which requires surgery to correct. And recently, while he was meeting with Holly's doctor, he found out that his scoliosis had progressed to the point where he also needs spinal fusion surgery.
(This picture is 10 years old, the new pictures are worse.)He has opted to put off his surgeries until after Holly has healed enough to go back to work, but will be scheduling them this year.
With three surgeries in the near future, their travel, stay, and medical bills are piling up.
Our parents do not travel well anymore and cannot help financially, so my husband and I are doing all we can to help. We can only do so much. Holly will need to stay in New York for about a month after her surgery before she is ready to travel home.
Shannon cannot stay to help Holly through her recovery and must return home to work shortly after her surgery, so I have dedicated my time to her recovery and will stay with her through the whole month.
My husband's family will be banding around him in my absence to care for our three children while mom takes care of Aunt Holly.
Unfortunately, we cannot offer much in the way of monetary help.
That's why we need you!
There is not a lot known about why people are born with VACTERL, but it usually requires many surgeries and long-term management. It is rare — many family doctors have not even heard of it. And it is hard to find doctors who know how to treat the issues that can occur with it.
All three of these surgeries are out of state and require expensive travel and housing. They'll have to get these procedures done with unpaid time off from work.
Holly and Shannon need help to keep their independence and be able to thrive through this rough time.
We appreciate anything you can give, even sharing their story on Facebook and other social media sites helps! When sharing, please use #Noblessurgeries so we can track how far this goes!
We all thank you from the bottom of our hearts!
Organizer and beneficiary
Heather Renae Kubik
Organizer
Sterling Heights, MI
Holly Nobles
Beneficiary