Donation protected
GOAL UPDATED: thanks to the amazing support!
There has been a whole lot of tears and love felt in the last 24 hours. What an incredible group of humans. We started our goal at $20,000 to help cover just some of the first procedure, with all the love and support I’m continuing to RAISE our Go Fund Me goal in hopes to make a dent in the many procedures he will need for years to come, and to help give Breyden and Darcy the life they SO deserve.
Hey guys, my leg is completely numb… has that ever happened to you before?” Breyden said in between volleyball games at the Sand Bar.
That was the first time Breyden or any of us had any idea he would be in for years of pain, specialist after specialist, surgery after surgery, and so many unknowns.
For those of you lucky enough to know Breyden he is the most positive, active, upbeat 32 year old you’ve ever met. Breyden has played volleyball for +15 years and has been with the love of his life, Darcy, for over 4 and a half years. He’d just started his dream job of working for himself as a general contractor with one of his best friends as his business partner.
That all came to a fast halt on July 21st 2019, one week after turning 30 years old. It started with his leg rapidly becoming numb over the course of just a couple hours, while at the SandBar in a volleyball tournament with Darcy. It eventually went completely numb and they rushed to the ER that night. They didn’t know how to diagnose it and sent him home with some steroids. Over the next month, Breyden couldn’t walk and Darcy pushed him around in a wheelchair and drove him to all his appointments, as they went from doctor to doctor trying to figure out what was wrong. MS and similar diseases were ruled out after 20+ blood tests and injections. They thought it was just a herniated disc, then a tethered cord, which he then received two surgeries for. The first surgery became exploratory and definitely caused more harm than good. The second surgery cleaned up after the first and also de-tethered the cord. After healing from surgery, the symptoms still did not subside. He was finally then diagnosed with nutcracker syndrome and then adhesive arachnoiditis.
Throughout this time he and his fiance have had to change nearly every part of their lives. From diet, physical activity, work, friendships--every part of Breydens life looks different. After Breyden’s left leg became paralyzed he had to relinquish his half of the company and begin to face what would become almost two years of physical and emotional pain and turmoil, not to mention the stresses on finances, relationships, and mental health. Before the surgeries he did everything he could to keep a job but lost them because of worsening symptoms and inability to perform. Since his surgeries and his symptoms progressively getting worse, he has been unable to work, spend time with friends/family, do anything active or even drive for more than a few minutes at a time as the constant pain in his lower back and legs becomes unbearable.
Along with that pain comes numbness, weakness, burning sensations, and tight muscles that cause extreme cramps throughout. On top of all that he’s been facing the emotional and physical challenges that come with bladder and bowel functions not working properly. He’s had to stay in bed for months at a time.
After several misdiagnoses, 15+ MRIs, 2 spinal surgeries, hundreds of hours in a hospital, countless prescriptions, enough doctors appointments to last many lifetimes, tens of thousands of dollars spent before insurance and another several after insurance. Each of these resulted in little progress, and some creating more issues than he began with.
Last week, Breyden and Darcy were given some heartbreaking news. He was diagnosed with Adhesive Arachnoiditis (AA). If you don't know anything about arachnoiditis that's because it is an extremely rare condition. Arachnoiditis is caused by some kind of trauma in the spinal cord. The trauma could be chemical, accidental or be from some kind of treatment like a spinal tap or surgery. It's unclear to medical professionals why it happens or how to stop it. Most professionals have never heard of AA and aren't sure how to cure or reverse arachnoiditis. Many people have lived with the debilitating effects for life.
Of course Breyden, Darcy, family, and all his friends refuse to give up. There is amazing new research that has found tremendous results and has saved the lives of people with AA in the field of Stem Cell. Stem Cell Therapy combined with other therapies like hyperbaric chamber therapy would help Breyden’s body do the healing it hasn't been able to do on its own. Here is a link to one of those individuals:
Stem Cell is really the last option at this point. It is a newly studied therapy but has been getting some truly amazing result healing problems, as easy as tendons and ligaments, to all kinds of nerve damage such as problems like ALS. Stem Cells are the building blocks of our bodies. They can duplicate themselves and then go about the body becoming any other cell of the body ie: blood cells, muscle cells, bone cells or even nerve cells and that is exactly where it can help Breyden. AA is a degenerative disease where the body is overactive in trying to heal the nerve damage in the spine causing excess inflammation of the nerves and spinal wall. This inflammation causes the nerves to stick together and function poorly. Eventually the nerves start to die because the cycle keeps getting worse and worse. By injecting stem cells into Breyden’s body it will help deliver those much needed building and repair cells to the damaged nerves and by doing it before there is too much damage will allow for better and more permanent healing.
Depending on factors like; what clinic, what diagnosis and how many treatments are needed for that condition, the price of Stem Cell Therapy can vary. Stem cell procedure costs range vastly depending on quality and quantity and experience of the different clinics. After meeting with physicians Breyden will need multiple units of stem cells and his conditions isn't an easily treatable one. He is spending every day looking into best options for price and ability but knows he needs to work fast as his condition and pain is getting worse.
We need your help making this happen. Insurance, of course, does not cover this procedure. We started our goal at $20,000 to help cover just some of the first procedure, with all the love and support I’m continuing to RAISE our Go Fund Me goal in hopes to make a dent in the many procedures he will need for years to come, and to help give Breyden and Darcy the life they SO deserve. They honestly might kill me for setting up this Go Fund Me, and would never ask anyone for help, so I’ll just do it for them. Better to ask for forgiveness than permission and they deserve health and happiness more than anyone.
Thank you so much for your time, if you’re able to send love, prayers and a donation their way please do. Anything helps.
There has been a whole lot of tears and love felt in the last 24 hours. What an incredible group of humans. We started our goal at $20,000 to help cover just some of the first procedure, with all the love and support I’m continuing to RAISE our Go Fund Me goal in hopes to make a dent in the many procedures he will need for years to come, and to help give Breyden and Darcy the life they SO deserve.
Hey guys, my leg is completely numb… has that ever happened to you before?” Breyden said in between volleyball games at the Sand Bar.
That was the first time Breyden or any of us had any idea he would be in for years of pain, specialist after specialist, surgery after surgery, and so many unknowns.
For those of you lucky enough to know Breyden he is the most positive, active, upbeat 32 year old you’ve ever met. Breyden has played volleyball for +15 years and has been with the love of his life, Darcy, for over 4 and a half years. He’d just started his dream job of working for himself as a general contractor with one of his best friends as his business partner.
That all came to a fast halt on July 21st 2019, one week after turning 30 years old. It started with his leg rapidly becoming numb over the course of just a couple hours, while at the SandBar in a volleyball tournament with Darcy. It eventually went completely numb and they rushed to the ER that night. They didn’t know how to diagnose it and sent him home with some steroids. Over the next month, Breyden couldn’t walk and Darcy pushed him around in a wheelchair and drove him to all his appointments, as they went from doctor to doctor trying to figure out what was wrong. MS and similar diseases were ruled out after 20+ blood tests and injections. They thought it was just a herniated disc, then a tethered cord, which he then received two surgeries for. The first surgery became exploratory and definitely caused more harm than good. The second surgery cleaned up after the first and also de-tethered the cord. After healing from surgery, the symptoms still did not subside. He was finally then diagnosed with nutcracker syndrome and then adhesive arachnoiditis.
Throughout this time he and his fiance have had to change nearly every part of their lives. From diet, physical activity, work, friendships--every part of Breydens life looks different. After Breyden’s left leg became paralyzed he had to relinquish his half of the company and begin to face what would become almost two years of physical and emotional pain and turmoil, not to mention the stresses on finances, relationships, and mental health. Before the surgeries he did everything he could to keep a job but lost them because of worsening symptoms and inability to perform. Since his surgeries and his symptoms progressively getting worse, he has been unable to work, spend time with friends/family, do anything active or even drive for more than a few minutes at a time as the constant pain in his lower back and legs becomes unbearable.
Along with that pain comes numbness, weakness, burning sensations, and tight muscles that cause extreme cramps throughout. On top of all that he’s been facing the emotional and physical challenges that come with bladder and bowel functions not working properly. He’s had to stay in bed for months at a time.
After several misdiagnoses, 15+ MRIs, 2 spinal surgeries, hundreds of hours in a hospital, countless prescriptions, enough doctors appointments to last many lifetimes, tens of thousands of dollars spent before insurance and another several after insurance. Each of these resulted in little progress, and some creating more issues than he began with.
Last week, Breyden and Darcy were given some heartbreaking news. He was diagnosed with Adhesive Arachnoiditis (AA). If you don't know anything about arachnoiditis that's because it is an extremely rare condition. Arachnoiditis is caused by some kind of trauma in the spinal cord. The trauma could be chemical, accidental or be from some kind of treatment like a spinal tap or surgery. It's unclear to medical professionals why it happens or how to stop it. Most professionals have never heard of AA and aren't sure how to cure or reverse arachnoiditis. Many people have lived with the debilitating effects for life.
Of course Breyden, Darcy, family, and all his friends refuse to give up. There is amazing new research that has found tremendous results and has saved the lives of people with AA in the field of Stem Cell. Stem Cell Therapy combined with other therapies like hyperbaric chamber therapy would help Breyden’s body do the healing it hasn't been able to do on its own. Here is a link to one of those individuals:
Stem Cell is really the last option at this point. It is a newly studied therapy but has been getting some truly amazing result healing problems, as easy as tendons and ligaments, to all kinds of nerve damage such as problems like ALS. Stem Cells are the building blocks of our bodies. They can duplicate themselves and then go about the body becoming any other cell of the body ie: blood cells, muscle cells, bone cells or even nerve cells and that is exactly where it can help Breyden. AA is a degenerative disease where the body is overactive in trying to heal the nerve damage in the spine causing excess inflammation of the nerves and spinal wall. This inflammation causes the nerves to stick together and function poorly. Eventually the nerves start to die because the cycle keeps getting worse and worse. By injecting stem cells into Breyden’s body it will help deliver those much needed building and repair cells to the damaged nerves and by doing it before there is too much damage will allow for better and more permanent healing.
Depending on factors like; what clinic, what diagnosis and how many treatments are needed for that condition, the price of Stem Cell Therapy can vary. Stem cell procedure costs range vastly depending on quality and quantity and experience of the different clinics. After meeting with physicians Breyden will need multiple units of stem cells and his conditions isn't an easily treatable one. He is spending every day looking into best options for price and ability but knows he needs to work fast as his condition and pain is getting worse.
We need your help making this happen. Insurance, of course, does not cover this procedure. We started our goal at $20,000 to help cover just some of the first procedure, with all the love and support I’m continuing to RAISE our Go Fund Me goal in hopes to make a dent in the many procedures he will need for years to come, and to help give Breyden and Darcy the life they SO deserve. They honestly might kill me for setting up this Go Fund Me, and would never ask anyone for help, so I’ll just do it for them. Better to ask for forgiveness than permission and they deserve health and happiness more than anyone.
Thank you so much for your time, if you’re able to send love, prayers and a donation their way please do. Anything helps.
Organizer and beneficiary
Janessa Kimball
Organizer
Salt Lake City, UT
Breyden Burley
Beneficiary