Help Restore Heather's Mobility
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Hi, my name is Lisa Belle and I am Heather Belle's daughter, and I am in desperate need to help my mother walk again. My mother is a 67 year old loving wife, mother and grandmother. She was diagnosed with a rare disease called Tumor-induced Osteomalacia, in 2020 which has left her bedridden and in excruciating pain since 2017. Without surgery and treatment, my mother health would continue to severely deteriorate. I am looking for donations to bring my mother to the USA to 1. locate the tumor and 2. have the operation needed to remove the tumor.
This is going to be expensive and we are in desperate need to raise $150,000 quickly. Unfortunately, Barbados does not have any facilities to accommodate a full-body MRI or PET-SCAN to locate the tumor. We are in desperate need to bring her to Mayo Clinic in Minnesota, USA. Due to my mom’s immobility she is unable to travel by commercial airlines, and would require her to fly by private carrier. From research, private carriers can cost upwards to $20,000. Additionally, she would require accommodations, radiology, surgery, medications, and physical therapy.
Unfortunately, Mayo informed us that my mom’s expenses will be out of pocket as she does not qualify for insurance in the USA. They also informed us depending on where the tumor is located, surgery to remove it can become extremely expensive.
My mom has always been a generous and kind person, and now she is relying on your generosity to help regain her mobility.
Every dollar counts in this journey to restoring my mother's mobility. Please assist my family and I in this journey to restoring my mother's health.
#letsrestoreheathermobility
Please Read My Mother’s Story Below
https://youtu.be/wkjrRiTwTfA
My name is Lisa Belle, and I am the daughter of Heather Belle. Heather is the proud mother of two children and an amazing grandmother to seven, and she lives on the small island of Barbados. Heather was diagnosed in October 2020 with a rare disease called Tumor-Inducted Osteomalacia. Our family would greatly appreciate your assistance with her medical expenses, transportation, and family support in the fight to cure this rare and damaging disease.
This devasting journey for my mom started back in 2017 and has grown progressively worse as time went by. Before her diagnosis in 2020, she visited multiple doctors in hopes of figuring out why she was losing her ability to walk. In the summer of 2017, my mom came to visit our family in the USA, which happens to be a yearly tradition since my children were born. However, something was different about this trip; my mom was having difficulty walking and getting out of bed. I found this very strange given that she was always a very active and sociable individual.
Being the individual I am, I needed to know what was happening to my mom’s mobility. My mom explained that she has been to her PCP in Barbados to get some much-needed answers to why she is having trouble walking, however, he was unable to give her any insight on why this was occurring. This, of course, was unacceptable for me, we needed a second opinion. I proceeded to schedule appointments upon her return to Barbados.
The first few visits resulted in a misdiagnosis of osteoporosis and spondylitis. She was referred to an Orthopedic Surgeon, who was able to confirm the misdiagnosis. However, the Orthopedic Surgeon was unable to find any medical reason why my mother’s mobility was diminishing. Between 2017 to 2019 my mother went to 10+ medical physicians and radiologists, even one holistic doctor to desperately gain some answers.
In 2019 after hearing how depressed and stressed my mother sounds, my family and I decided to surprise her to hopefully relieve her emotional and physical distress. Upon arriving, I was extremely shocked to see how much my mother’s health has deteriorated. Too much of my surprise, my mom needed assistance to complete just about every task. By this time, my dad was my mother’s sole caregiver. He had to bathe her, change her, and assist her with everyday tasks, all at the age of 77 years old. At this point, I was paralyzed from shock seeing both my parents straggling to get everyday simple tasks done.
I immediately started a plan in motion to gain a diagnosis for my mother so we can desperately find a cure for my mother. At this time, I contacted Mayo Clinic, in the USA, and forward all her medical records to be reviewed. After a few days, Mayo Clinic contacted me and explained that I need to immediately contact Dr. T Drake who specializes in Endocrinology.
Fortunately, due to COVID-19, my mother gains an international virtual appointment to discuss her medical case. After a lengthy first visit, Dr. Drakes ordered several blood tests to gain some insight on why my mother was now wheelchair-bound. Dr. Drakes informed us, after her results, that my mother had elevated phosphate levels. He further stated that he may have a much-needed diagnosis, however, I needed one more test.
On October 14, 2020, we gratefully got the diagnosis we so desperately needed. Tumor-Inducted Osteomalacia. Tumor-Inducted Osteomalacia is a rare paraneoplastic syndrome in which patients present with bone pain, fractures, and muscle weakness. The cause is high blood levels of the recently identified phosphate and vitamin D-regulating hormone. After 3 long years of going from doctor to doctor, my mother finally gained a diagnosis.
However, this is the time we realized the challenges that came with finding a cure for her. After talking to Dr. Drakes, he informed us that my mother would need either a PET-Scan or a Full Body MRI to locate my mother’s tumor. We immediately contacted the radiologist in Barbados to see if they offered either option. Unfortunately, the radiologist informed us they do not have a PET-Scan machine and, they are only able to conduct an MRI in various sections which are physically impossible in her case since she is now bedridden. With this news, our heart sunk, and we knew the next best step is to bring my mother to the USA to locate the tumor and then have the operation to remove the tumor.
Unfortunately, our heart sunk even more when we remembered she is bedridden. This meant getting her to the USA via private measures since commercial airplanes are not an option because of seating arrangements; she needs to be on a stretcher for transportation to the USA.
We are sharing this story to bring awareness to this rare disease and to desperately gain financial donations to help regain her mobility. Our family would like to thank you in advance from the bottom of our hearts. We know that all of us are being impacted by Covid-19 in some kind-of-way, so even if you are not able to donate please share our story or share your stories with us about people who were cured after a Tumor-Inducted Osteomalacia diagnosis.
Thank you from the bottom of our hearts for taking the time to read this.
Please note I set up this page on my mother’s behalf and my mother has full access to all the funds. I have approval from her to make this page on her behalf.
This is going to be expensive and we are in desperate need to raise $150,000 quickly. Unfortunately, Barbados does not have any facilities to accommodate a full-body MRI or PET-SCAN to locate the tumor. We are in desperate need to bring her to Mayo Clinic in Minnesota, USA. Due to my mom’s immobility she is unable to travel by commercial airlines, and would require her to fly by private carrier. From research, private carriers can cost upwards to $20,000. Additionally, she would require accommodations, radiology, surgery, medications, and physical therapy.
Unfortunately, Mayo informed us that my mom’s expenses will be out of pocket as she does not qualify for insurance in the USA. They also informed us depending on where the tumor is located, surgery to remove it can become extremely expensive.
My mom has always been a generous and kind person, and now she is relying on your generosity to help regain her mobility.
Every dollar counts in this journey to restoring my mother's mobility. Please assist my family and I in this journey to restoring my mother's health.
#letsrestoreheathermobility
Please Read My Mother’s Story Below
https://youtu.be/wkjrRiTwTfA
My name is Lisa Belle, and I am the daughter of Heather Belle. Heather is the proud mother of two children and an amazing grandmother to seven, and she lives on the small island of Barbados. Heather was diagnosed in October 2020 with a rare disease called Tumor-Inducted Osteomalacia. Our family would greatly appreciate your assistance with her medical expenses, transportation, and family support in the fight to cure this rare and damaging disease.
This devasting journey for my mom started back in 2017 and has grown progressively worse as time went by. Before her diagnosis in 2020, she visited multiple doctors in hopes of figuring out why she was losing her ability to walk. In the summer of 2017, my mom came to visit our family in the USA, which happens to be a yearly tradition since my children were born. However, something was different about this trip; my mom was having difficulty walking and getting out of bed. I found this very strange given that she was always a very active and sociable individual.
Being the individual I am, I needed to know what was happening to my mom’s mobility. My mom explained that she has been to her PCP in Barbados to get some much-needed answers to why she is having trouble walking, however, he was unable to give her any insight on why this was occurring. This, of course, was unacceptable for me, we needed a second opinion. I proceeded to schedule appointments upon her return to Barbados.
The first few visits resulted in a misdiagnosis of osteoporosis and spondylitis. She was referred to an Orthopedic Surgeon, who was able to confirm the misdiagnosis. However, the Orthopedic Surgeon was unable to find any medical reason why my mother’s mobility was diminishing. Between 2017 to 2019 my mother went to 10+ medical physicians and radiologists, even one holistic doctor to desperately gain some answers.
In 2019 after hearing how depressed and stressed my mother sounds, my family and I decided to surprise her to hopefully relieve her emotional and physical distress. Upon arriving, I was extremely shocked to see how much my mother’s health has deteriorated. Too much of my surprise, my mom needed assistance to complete just about every task. By this time, my dad was my mother’s sole caregiver. He had to bathe her, change her, and assist her with everyday tasks, all at the age of 77 years old. At this point, I was paralyzed from shock seeing both my parents straggling to get everyday simple tasks done.
I immediately started a plan in motion to gain a diagnosis for my mother so we can desperately find a cure for my mother. At this time, I contacted Mayo Clinic, in the USA, and forward all her medical records to be reviewed. After a few days, Mayo Clinic contacted me and explained that I need to immediately contact Dr. T Drake who specializes in Endocrinology.
Fortunately, due to COVID-19, my mother gains an international virtual appointment to discuss her medical case. After a lengthy first visit, Dr. Drakes ordered several blood tests to gain some insight on why my mother was now wheelchair-bound. Dr. Drakes informed us, after her results, that my mother had elevated phosphate levels. He further stated that he may have a much-needed diagnosis, however, I needed one more test.
On October 14, 2020, we gratefully got the diagnosis we so desperately needed. Tumor-Inducted Osteomalacia. Tumor-Inducted Osteomalacia is a rare paraneoplastic syndrome in which patients present with bone pain, fractures, and muscle weakness. The cause is high blood levels of the recently identified phosphate and vitamin D-regulating hormone. After 3 long years of going from doctor to doctor, my mother finally gained a diagnosis.
However, this is the time we realized the challenges that came with finding a cure for her. After talking to Dr. Drakes, he informed us that my mother would need either a PET-Scan or a Full Body MRI to locate my mother’s tumor. We immediately contacted the radiologist in Barbados to see if they offered either option. Unfortunately, the radiologist informed us they do not have a PET-Scan machine and, they are only able to conduct an MRI in various sections which are physically impossible in her case since she is now bedridden. With this news, our heart sunk, and we knew the next best step is to bring my mother to the USA to locate the tumor and then have the operation to remove the tumor.
Unfortunately, our heart sunk even more when we remembered she is bedridden. This meant getting her to the USA via private measures since commercial airplanes are not an option because of seating arrangements; she needs to be on a stretcher for transportation to the USA.
We are sharing this story to bring awareness to this rare disease and to desperately gain financial donations to help regain her mobility. Our family would like to thank you in advance from the bottom of our hearts. We know that all of us are being impacted by Covid-19 in some kind-of-way, so even if you are not able to donate please share our story or share your stories with us about people who were cured after a Tumor-Inducted Osteomalacia diagnosis.
Thank you from the bottom of our hearts for taking the time to read this.
Please note I set up this page on my mother’s behalf and my mother has full access to all the funds. I have approval from her to make this page on her behalf.
Organizer
Lisa Belle
Organizer
Raritan, NJ