Support for Jaiden and Stephanie
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My name is Joshua I am the uncle of Jaiden Kipp.
Hi All, I’ve put this fundraiser together in an effort to support my sister, Stephanie, and her daughter, Jaiden, my 16 year old niece. I will do my best to make this post as short and concise as possible, while being as informative as I can. As I am still having a hard time, wrapping my head around all the information we are receiving, from her team of Medical Doctors.
During the summer of 2009, when Jaiden was 5 years old, she had a sudden onset of pain and what appeared to be neurological stoke like symptoms. After numerous hospital, Dr., and emergency room visits, they were finally able to find an abnormal mass of blood vessels that had hemorrhaged and caused swelling within and throughout her spinal cord. She was diagnosed with what is called an Arteriovenous Malformation (AVM - an abnormal mass of blood vessels connecting arteries and veins, which disrupts normal blood flow and oxygen circulation). Arteries are responsible for taking oxygen-rich blood from the heart to the brain. Veins carry the oxygen-depleted blood back to the lungs and heart. Capillaries slow down the flow of blood between the two, however this AVM bypasses those capillaries and goes through what is called a Fiscular Passageway, increasing the flow and pressure on her delicate veins. This particular AVM, It is located in C6 & C7 of her spinal cord, which controls everything from her neck down. At that time the greatest risk to Jaiden was becoming a paraplegic, emergency surgery was needed. During a 9 hour surgery at Tufts Medical Center in Boston, where performed microsurgery inside her spinal cord, removing the portion of AVM that had hemorrhaged at that time.
We were told at that time, there was no cure and they could not remove the entire AVM, as what was remaining was intertwined and wrapped throughout and around her spinal cord. If you can imagine a tree root of arteries growing in your spinal cord, entangling itself within the nerves. The potential for paralysis was to much to risk, as the odds of this surgery itself were already not in our favor. She beat all the odds, started school three weeks later on time, and was able to go back to competitive gymnastics.
Fast forward 7 years to the summer of 2016, puberty. Jaiden, again started to experience sudden nuerological symptoms, nerve pain throughout her entire right side, as well as, weakness, loss of use and feeling of her right arm and leg. Scans had shown that the AVM had grown and was very active, and had caused edema in her spinal cord. The pressure and swelling her in cord, was the symptoms, we were seeing. This time however there were some advancements in AVM treatment. Jaiden being older and now physically bigger, her Dr. Was able to do an angiogram and enter through her main artery in her leg, and was able to map the AVM with from the inside. This AVM has 3 main feeders supplying the AVM with large amounts of fast flowing blood. Through a process called “Catheter Embolization” which is where Drs. are able to place a unique type of glue into the arteries in effort to block the blood flow feeding the AVM. After another 4-5 hour procedure, Drs. Were only able to safely Emobilize only 1 of the feeders, as the risk of paralysis was too great to attempt to touch the other two remaining. This was still only a bandaid, hoping to get Jaiden through puberty and into adulthood, where he hormone levels and growth would level off.
One of the main concerns of an AVM, especially one that has already had a bleed, is the risk for another bleed goes up 9% every year, from the initial bleed. Jaiden was left with increased weakness from extended period of pressure and lack of oxygen her spinal cord was getting. After the procedure, she no longer had the strength to continue with her love of gymnastics, however, she was determined and was able to find competitive cheer, she made varsity her freshmen year, beating the odds once again.
Fast forward again to 2020, Jaiden, started experiencing symptoms again, this time though they were very different. She was now experience migraines, pressure in her head and at the back of her neck, as well as, pain on both the left and right sides. Additional testing and another angiogram, showed some devastating news. The AVM had grown significantly, had become extremely aggressive and active, and has now grown to her Brain Stem. Best case scenario was this had grown slowly over the last 4 years, since she has had no issues between then and now. Worst case, was that it’s growth was as sudden as her onset of new symptoms. The risk factor went from paralysis to now life threatening. Something had to be done and soon, Drs. Just didn’t know how soon. Game-plan moving forward was to recheck Jaiden with another angiogram in two months to measure the growth and blood flow. The issue with this AVM is the blood flow and pressure at her brain stem is so massive, with such a high risk of rupture.
Jaiden was sent home, with an emergency plan in place should signs of a rupture occur while waiting out the two months in-between angiograms. In such an instance, Stephanie would have to get Jaiden to the nearest emergency, to get her stabilized and then Medivac flight to Boston Children's Hospital. Stephanie’s job for over the last 3 months has been to keep Jaiden in sight to monitor her for what would or could present itself as a stroke. Anything larger than a small minor bleed at the brain stem, and her odds are not something I can ever bring myself to write about. On Wednesday, July 1st, Jaiden felt a significant change and was rushed to Boston. A subsequent angiogram revealed the blood flow, at the feeders, and around her brain stem had increased significantly, which did not leave many options on the table. The team agreed they needed to go in an embolize the remaining 2 feeders, which they were afraid to touch last time, in fear of leaving Jaiden with life changing Neurological issues, but now the embolization is in effort to save Jaidens Life.
This procedure is scheduled for July 28th. The risk factors are very high. the purpose of this fund raiser is to assist Stephanie and Jaiden with everyday living expenses as Steph has had to remain home to closely monitor Jaiden. Jaiden has been restricted from any activities that would elevate blood pressure. After the procedure Jaiden will remain in the ICU for a few days as having to stop the blood flow to a portion of her spinal cord and Brain the Drs. are, at best, unclear if there will be any neurological damage caused. Jaidens’ beat the odds at every corner thus far, we know that trend will continue! Thank you for your help.
Hi All, I’ve put this fundraiser together in an effort to support my sister, Stephanie, and her daughter, Jaiden, my 16 year old niece. I will do my best to make this post as short and concise as possible, while being as informative as I can. As I am still having a hard time, wrapping my head around all the information we are receiving, from her team of Medical Doctors.
During the summer of 2009, when Jaiden was 5 years old, she had a sudden onset of pain and what appeared to be neurological stoke like symptoms. After numerous hospital, Dr., and emergency room visits, they were finally able to find an abnormal mass of blood vessels that had hemorrhaged and caused swelling within and throughout her spinal cord. She was diagnosed with what is called an Arteriovenous Malformation (AVM - an abnormal mass of blood vessels connecting arteries and veins, which disrupts normal blood flow and oxygen circulation). Arteries are responsible for taking oxygen-rich blood from the heart to the brain. Veins carry the oxygen-depleted blood back to the lungs and heart. Capillaries slow down the flow of blood between the two, however this AVM bypasses those capillaries and goes through what is called a Fiscular Passageway, increasing the flow and pressure on her delicate veins. This particular AVM, It is located in C6 & C7 of her spinal cord, which controls everything from her neck down. At that time the greatest risk to Jaiden was becoming a paraplegic, emergency surgery was needed. During a 9 hour surgery at Tufts Medical Center in Boston, where performed microsurgery inside her spinal cord, removing the portion of AVM that had hemorrhaged at that time.
We were told at that time, there was no cure and they could not remove the entire AVM, as what was remaining was intertwined and wrapped throughout and around her spinal cord. If you can imagine a tree root of arteries growing in your spinal cord, entangling itself within the nerves. The potential for paralysis was to much to risk, as the odds of this surgery itself were already not in our favor. She beat all the odds, started school three weeks later on time, and was able to go back to competitive gymnastics.
Fast forward 7 years to the summer of 2016, puberty. Jaiden, again started to experience sudden nuerological symptoms, nerve pain throughout her entire right side, as well as, weakness, loss of use and feeling of her right arm and leg. Scans had shown that the AVM had grown and was very active, and had caused edema in her spinal cord. The pressure and swelling her in cord, was the symptoms, we were seeing. This time however there were some advancements in AVM treatment. Jaiden being older and now physically bigger, her Dr. Was able to do an angiogram and enter through her main artery in her leg, and was able to map the AVM with from the inside. This AVM has 3 main feeders supplying the AVM with large amounts of fast flowing blood. Through a process called “Catheter Embolization” which is where Drs. are able to place a unique type of glue into the arteries in effort to block the blood flow feeding the AVM. After another 4-5 hour procedure, Drs. Were only able to safely Emobilize only 1 of the feeders, as the risk of paralysis was too great to attempt to touch the other two remaining. This was still only a bandaid, hoping to get Jaiden through puberty and into adulthood, where he hormone levels and growth would level off.
One of the main concerns of an AVM, especially one that has already had a bleed, is the risk for another bleed goes up 9% every year, from the initial bleed. Jaiden was left with increased weakness from extended period of pressure and lack of oxygen her spinal cord was getting. After the procedure, she no longer had the strength to continue with her love of gymnastics, however, she was determined and was able to find competitive cheer, she made varsity her freshmen year, beating the odds once again.
Fast forward again to 2020, Jaiden, started experiencing symptoms again, this time though they were very different. She was now experience migraines, pressure in her head and at the back of her neck, as well as, pain on both the left and right sides. Additional testing and another angiogram, showed some devastating news. The AVM had grown significantly, had become extremely aggressive and active, and has now grown to her Brain Stem. Best case scenario was this had grown slowly over the last 4 years, since she has had no issues between then and now. Worst case, was that it’s growth was as sudden as her onset of new symptoms. The risk factor went from paralysis to now life threatening. Something had to be done and soon, Drs. Just didn’t know how soon. Game-plan moving forward was to recheck Jaiden with another angiogram in two months to measure the growth and blood flow. The issue with this AVM is the blood flow and pressure at her brain stem is so massive, with such a high risk of rupture.
Jaiden was sent home, with an emergency plan in place should signs of a rupture occur while waiting out the two months in-between angiograms. In such an instance, Stephanie would have to get Jaiden to the nearest emergency, to get her stabilized and then Medivac flight to Boston Children's Hospital. Stephanie’s job for over the last 3 months has been to keep Jaiden in sight to monitor her for what would or could present itself as a stroke. Anything larger than a small minor bleed at the brain stem, and her odds are not something I can ever bring myself to write about. On Wednesday, July 1st, Jaiden felt a significant change and was rushed to Boston. A subsequent angiogram revealed the blood flow, at the feeders, and around her brain stem had increased significantly, which did not leave many options on the table. The team agreed they needed to go in an embolize the remaining 2 feeders, which they were afraid to touch last time, in fear of leaving Jaiden with life changing Neurological issues, but now the embolization is in effort to save Jaidens Life.
This procedure is scheduled for July 28th. The risk factors are very high. the purpose of this fund raiser is to assist Stephanie and Jaiden with everyday living expenses as Steph has had to remain home to closely monitor Jaiden. Jaiden has been restricted from any activities that would elevate blood pressure. After the procedure Jaiden will remain in the ICU for a few days as having to stop the blood flow to a portion of her spinal cord and Brain the Drs. are, at best, unclear if there will be any neurological damage caused. Jaidens’ beat the odds at every corner thus far, we know that trend will continue! Thank you for your help.
Organizer and beneficiary
Joshua Thivierge
Organizer
York, SC
Stephanie Thivierge
Beneficiary