Saving Grace for Amanda
Donation protected
Desperate Pleas from a Mother... My name is Dian Taylor. My daughter is Amanda Taylor and she is now 23 years old. I’m reaching out to the world, asking for your help to end the suffering and debilitating pain from which she cannot escape without proper treatment. Amanda suffers from two extremely rare disorders, Nutcracker Syndrome and Loin Pain Hematuria Syndrome. She is classified as a “case study”… one of only 245 in the world. Treatment is available, but not here in Arizona. Most doctors are unaware of these conditions; those who are, are not surgically qualified.
A little about Amanda…
Amanda is a beautiful 23 year old who has a passion and appreciation for life, is filled with love and kindness, and when not in pain, maintains her good sense of humor. She has been patient and hopeful throughout this long ordeal. She is wife to her loving husband, John and mother to their 4 year old son, Charlie.
In July, 2016, Amanda began suffering from random abdominal pain attacks, leaving her unconscious, and at times, she has stopped breathing. For the next six months, days and nights were filled with 911 calls, ambulance transports, emergency rooms and diagnostic specialists.
In January, 2017, Saint Joseph’s Hospital diagnosed her with a very rare vascular disorder, known as “Nutcracker Syndrome”. It is a disorder in which clean blood cannot make its way through the left renal vein as it should because it is being crushed by the abdominal aorta and the SMA. Amanda has over 65% compression. This results in blood being forced backwards, against the flow or through other veins which are either too small or dangerous, such as spinal cord or brain. Blood vessel congestion and rupture are a serious concern.
In March, 2017, Amanda became a patient and second case study at Mayo Clinic, the only facility in Arizona with any treatment experience. I built a solid case to have AHCCCS approve an out-of-network provider and submitted Amanda’s case to Mayo’s Clinical Review Board for their acceptance. She was accepted. After four months of additional tests, including diagnostic and exploratory surgeries, we were devastated to hear from Mayo’s Administrators that the auto transplant surgery she needed was not one they had experience with or had ever performed.
Following Mayo Clinic’s disappointing news, we sought treatment at the University of Wisconsin from pioneer and world-renowned Transplant Surgeon, Dr. Hans Sollinger. We have been speaking with him on a regular basis to discuss Amanda and her plans to visit prior to surgery. The University of Wisconsin has recently opened the country’s first Loin Pain Hematuria Syndrome Clinic. Our focus now must be that Amanda will, very soon, be in the good grace of God and the competent hands of Dr. Sollinger.
One surgery will treat BOTH rare disorders. An August, 2017 written response from the University of Wisconsin Hospital and Clinics indicates the cost of the Renal Auto Transplant as being upwards of $127,550. They noted... "It is important to emphasize that this amount, is only an estimate. Actual charges may differ significantly.".
I realize now that I simply cannot do this alone and should accept the fact that I need help. I, myself, have sold my house and given every last dollar I have to pay for her care. I live a simple life and work as much as I possibly can, when I can. However, Amanda is my main focus and always has been. I must remind myself daily that I need to take care of myself, so I can be there for her.
Help is needed to cover her medical expenses, and needs that will arise, such as hotels, flights, meals, moving costs to a single story home, etc.. Please help spread the word by sharing our story with every person you come in contact with.
As we push forward, it will mean the world to us to know we are in your thoughts and prayers…as you will be in ours. And if you are able to donate, please go to our “Go Fund Me” page where even the smallest donation will be gratefully received.
I want to take this opportunity to thank my Mom (Carole Sommero), son and daughter-in-law (Devon and Caitlyn), sisters (Karin & Donna), closest friends and family members for their continued love, support and guidance. To Anne Huggins and Mary Lacy (Amanda's mother-in-law and grandmother-in-law), thank you for your love and support in ways that have been so helpful. To the HUTCH Fund Administrative Committee who benefit members in crisis, Scottsdale Area Association of Realtors and West USA Realty, I am grateful for your compassion and giving support in several areas. To my client and friend, Dr. Roy Patchell, Oncologist/former Chief of Staff at Barrow’s Neurological, thank you for “making things happen” at the drop of a hat… her seizures are now under control. To my dear friend Greg Davis, Founder and Principal, Davis, Blaas & Holder, thank you for being there for us and for keeping me from climbing a tree. Very few people know what we’re going through, but it is now time for us to share our story.
Thank you, Everyone!
Dian Taylor, Mom
Disclosure: The campaign creator, Dian Taylor, is acting on behalf of the beneficiary, Amanda Taylor. Gifts are solicited. In making a donation, donors agree that their donations are gifts made out of detached and disinterested generosity, affection, respect, admiration, charity or like impulses, and not from any moral or legal duty, or from the incentive of anticipated benefit, or in return for good or services rendered. Donors shall receive nothing in return for their donation.
A little about Amanda…
Amanda is a beautiful 23 year old who has a passion and appreciation for life, is filled with love and kindness, and when not in pain, maintains her good sense of humor. She has been patient and hopeful throughout this long ordeal. She is wife to her loving husband, John and mother to their 4 year old son, Charlie.
In July, 2016, Amanda began suffering from random abdominal pain attacks, leaving her unconscious, and at times, she has stopped breathing. For the next six months, days and nights were filled with 911 calls, ambulance transports, emergency rooms and diagnostic specialists.
In January, 2017, Saint Joseph’s Hospital diagnosed her with a very rare vascular disorder, known as “Nutcracker Syndrome”. It is a disorder in which clean blood cannot make its way through the left renal vein as it should because it is being crushed by the abdominal aorta and the SMA. Amanda has over 65% compression. This results in blood being forced backwards, against the flow or through other veins which are either too small or dangerous, such as spinal cord or brain. Blood vessel congestion and rupture are a serious concern.
In March, 2017, Amanda became a patient and second case study at Mayo Clinic, the only facility in Arizona with any treatment experience. I built a solid case to have AHCCCS approve an out-of-network provider and submitted Amanda’s case to Mayo’s Clinical Review Board for their acceptance. She was accepted. After four months of additional tests, including diagnostic and exploratory surgeries, we were devastated to hear from Mayo’s Administrators that the auto transplant surgery she needed was not one they had experience with or had ever performed.
Following Mayo Clinic’s disappointing news, we sought treatment at the University of Wisconsin from pioneer and world-renowned Transplant Surgeon, Dr. Hans Sollinger. We have been speaking with him on a regular basis to discuss Amanda and her plans to visit prior to surgery. The University of Wisconsin has recently opened the country’s first Loin Pain Hematuria Syndrome Clinic. Our focus now must be that Amanda will, very soon, be in the good grace of God and the competent hands of Dr. Sollinger.
One surgery will treat BOTH rare disorders. An August, 2017 written response from the University of Wisconsin Hospital and Clinics indicates the cost of the Renal Auto Transplant as being upwards of $127,550. They noted... "It is important to emphasize that this amount, is only an estimate. Actual charges may differ significantly.".
I realize now that I simply cannot do this alone and should accept the fact that I need help. I, myself, have sold my house and given every last dollar I have to pay for her care. I live a simple life and work as much as I possibly can, when I can. However, Amanda is my main focus and always has been. I must remind myself daily that I need to take care of myself, so I can be there for her.
Help is needed to cover her medical expenses, and needs that will arise, such as hotels, flights, meals, moving costs to a single story home, etc.. Please help spread the word by sharing our story with every person you come in contact with.
As we push forward, it will mean the world to us to know we are in your thoughts and prayers…as you will be in ours. And if you are able to donate, please go to our “Go Fund Me” page where even the smallest donation will be gratefully received.
I want to take this opportunity to thank my Mom (Carole Sommero), son and daughter-in-law (Devon and Caitlyn), sisters (Karin & Donna), closest friends and family members for their continued love, support and guidance. To Anne Huggins and Mary Lacy (Amanda's mother-in-law and grandmother-in-law), thank you for your love and support in ways that have been so helpful. To the HUTCH Fund Administrative Committee who benefit members in crisis, Scottsdale Area Association of Realtors and West USA Realty, I am grateful for your compassion and giving support in several areas. To my client and friend, Dr. Roy Patchell, Oncologist/former Chief of Staff at Barrow’s Neurological, thank you for “making things happen” at the drop of a hat… her seizures are now under control. To my dear friend Greg Davis, Founder and Principal, Davis, Blaas & Holder, thank you for being there for us and for keeping me from climbing a tree. Very few people know what we’re going through, but it is now time for us to share our story.
Thank you, Everyone!
Dian Taylor, Mom
Disclosure: The campaign creator, Dian Taylor, is acting on behalf of the beneficiary, Amanda Taylor. Gifts are solicited. In making a donation, donors agree that their donations are gifts made out of detached and disinterested generosity, affection, respect, admiration, charity or like impulses, and not from any moral or legal duty, or from the incentive of anticipated benefit, or in return for good or services rendered. Donors shall receive nothing in return for their donation.
Organizer and beneficiary
Dian Sommero-Taylor
Organizer
Phoenix, AZ
Amanda Lynn Taylor
Beneficiary
