Amelia's New Hip, New Life
Donation protected
Dearest family of friends,
For the past year I have been struggling to find a solution to a complicated health condition that has deeply affected my life, and progressed, leaving me without the ability to walk now dependent on a wheelchair and help from my friends. I realize many of you may not know the details of my condition as I have been largely internal with this process, but I love you and feel it is time to reach out.
Stemming from a severe skiing accident in 2004, my right hip bone has been diagnosed with Avascular Necrosis - the death of bone tissue due to a lack of blood supply. It has led to the bone's collapse. A full hip replacement is immediately necessary.
Unfortunately, the prognosis and treatment of the collapsed femoral head is being further complicated. In the same hip, I have been simultaneously diagnosed with Pigmented Villonodular Synovitis (PVNS) - a very rare disease of the synovium. The synovium is thin layer of tissue that lines the joints and tendons, and produces the lubricant for the joint. PVNS causes the synovium to overgrow, forming extensive erosive tumors throughout the joint and surrounding area, badly damaging bones and soft tissues. Very little is known of this disease. The most effective treatment to date is surgical removal. However, the success rate of surgery is at best partial because the disease often grows back. Further surgeries and potential radiation therapies are often necessary.
In the case of a full hip replacement and regrowth of the synovium with PVNS, the anchor bones of my replacement could be compromised. In that instance, worst case, amputation of the leg would be necessary.
After months of searching for answers, unable to work or perform daily tasks for the most part, and 17 medical professionals later, I have found an Orthopedic Oncologist in Salt Lake City, Utah. He is willing to perform a complicated removal of the diseased tissues and full hip replacement. I will be undergoing this procedure the 30th of September.
The rarity of my case has made it difficult for him to predict results, as there are very few documented cases and no "right" surgical approach. My recovery time is projected to be 3x longer than a normal hip replacement. Recovery might reach into a full year or beyond.
I am opening myself to ask for the help needed to get through this time and come out on the other side better than before. I thought I could do this with my family alone who have provided immense support, but we are better in numbers and I am learning to ask for help when it is needed. I am overwhelmingly grateful for your love.
Your contributions will afford:
~ Hip Replacement Procedure and Removal Disease
~ Possibility of Recovery Time: Living Expenses for 3 Months
~ Extensive Post-op Physical Therapy Necessary to be Able to Walk Again
~ Outstanding Medical Bills
Every little bit helps. Even a $10 contribution is tremendous. Yet, please know that if you are unable to contribute financially, I feel your love surrounding me. I could not have made it this far without the magnificent collection of humans I call my friends and family. Thank you for your support and making every moment of this battle well worth it!
I will walk with you again,
I will run with you again,
I will dance with you again.
I LOVE YOU,
Amelia Rose Barlow
For the past year I have been struggling to find a solution to a complicated health condition that has deeply affected my life, and progressed, leaving me without the ability to walk now dependent on a wheelchair and help from my friends. I realize many of you may not know the details of my condition as I have been largely internal with this process, but I love you and feel it is time to reach out.
Stemming from a severe skiing accident in 2004, my right hip bone has been diagnosed with Avascular Necrosis - the death of bone tissue due to a lack of blood supply. It has led to the bone's collapse. A full hip replacement is immediately necessary.
Unfortunately, the prognosis and treatment of the collapsed femoral head is being further complicated. In the same hip, I have been simultaneously diagnosed with Pigmented Villonodular Synovitis (PVNS) - a very rare disease of the synovium. The synovium is thin layer of tissue that lines the joints and tendons, and produces the lubricant for the joint. PVNS causes the synovium to overgrow, forming extensive erosive tumors throughout the joint and surrounding area, badly damaging bones and soft tissues. Very little is known of this disease. The most effective treatment to date is surgical removal. However, the success rate of surgery is at best partial because the disease often grows back. Further surgeries and potential radiation therapies are often necessary.
In the case of a full hip replacement and regrowth of the synovium with PVNS, the anchor bones of my replacement could be compromised. In that instance, worst case, amputation of the leg would be necessary.
After months of searching for answers, unable to work or perform daily tasks for the most part, and 17 medical professionals later, I have found an Orthopedic Oncologist in Salt Lake City, Utah. He is willing to perform a complicated removal of the diseased tissues and full hip replacement. I will be undergoing this procedure the 30th of September.
The rarity of my case has made it difficult for him to predict results, as there are very few documented cases and no "right" surgical approach. My recovery time is projected to be 3x longer than a normal hip replacement. Recovery might reach into a full year or beyond.
I am opening myself to ask for the help needed to get through this time and come out on the other side better than before. I thought I could do this with my family alone who have provided immense support, but we are better in numbers and I am learning to ask for help when it is needed. I am overwhelmingly grateful for your love.
Your contributions will afford:
~ Hip Replacement Procedure and Removal Disease
~ Possibility of Recovery Time: Living Expenses for 3 Months
~ Extensive Post-op Physical Therapy Necessary to be Able to Walk Again
~ Outstanding Medical Bills
Every little bit helps. Even a $10 contribution is tremendous. Yet, please know that if you are unable to contribute financially, I feel your love surrounding me. I could not have made it this far without the magnificent collection of humans I call my friends and family. Thank you for your support and making every moment of this battle well worth it!
I will walk with you again,
I will run with you again,
I will dance with you again.
I LOVE YOU,
Amelia Rose Barlow
Organizer
Amelia Rose Barlow
Organizer
Los Angeles, CA
