Brighton Strong
Donation protected
Let me start by saying that my daughter is the strongest human that I know.
On January 10, 2016, just a little over a month before her 16th birthday, my daughter, Brighton's, kidneys failed. She has a kidney disease called C3 Glomerulonephritis. She was initially diagnosed in approx 2005 with Membranoproliferative Glomerulonephritis (its in the same family as C3GN just a more precise diagnosis). We were told at that time that her kidneys would probably fail within 10 years, 15 at the longest. She made it 11 years, so we'll take that all day long. She also has a white blood cell disorder called Chronic Granulomatous Disease. The two disorders are extremely rare and have never been seen together before. Trust me - we've even spoken to and sent loads and loads of information to the NIH and they have never seen anything quite like her.
I'm a single mom and an RN and haven't been able to work since this happened. I'm her only caregiver, transporter, medication and diet enforcer, private home health nurse, coordinator of appointments, dressing changer, and all of the things. She has dialysis 3 days a week (it's a 89 mile round trip to the facility), frequent doctors appointments and, bless her heart, has had more complications and unexpected surgeries than any one human should ever have to endure. Every time that I think that I can commit to working somewhere - there is some kind of crazy complication that typically involves the hospital or operating room.
It has been a very long almost 5 years of hospitalizations, doctors appointments, surgeries, procedures, labs, scans, pokes, prods, bruises, scars, blood, sweat and tears. She was blessed to receive a new kidney in August 2019, but she lost it (it actually ruptured) just 3 days later. The transplant team had never seen anything like it. And now - over a year later - we still have no answers. The transplant center was so overwhelmed by her that they basically said that "she's too hard" and recommended that we seek a second opinion. She had been accepted and we had an appointment for an eval right when Covid-19 reared it's very ugly head. Her physicians and I have all agreed that she is just too high risk to even remotely attempt a transplant at this time. After someone receives a new organ their immune system is essentially completely shut down to prevent rejection. This is just not something that any of us feel is worth the risk. There is just still too much that is unknown about this virus. So - we're in a total holding pattern. And even though, as an RN, I am considered absolutely essential right now - we are also all in agreement that it's highly inadvisable that I risk exposure. So - we wait.
I cannot even begin to express to you the frustration that we're all feeling. I had just recently closed our prior GoFundMe account as 1) it expired, and 2) I honestly thought that we were going to be ok. Well - we're not ok. I have recently lost approximately $1200 in income/support and it has left me in a position of not being able to pay several bills, rent being the most important.
We have been blessed over the past 5 years to be the recipients of the most overwhelming generosity and the thought of asking for more is absolutely nauseating. We thank you in advance for anything that you're able to do.
In Him we remain -
Janet, Brighton, Trevor & Daniel
On January 10, 2016, just a little over a month before her 16th birthday, my daughter, Brighton's, kidneys failed. She has a kidney disease called C3 Glomerulonephritis. She was initially diagnosed in approx 2005 with Membranoproliferative Glomerulonephritis (its in the same family as C3GN just a more precise diagnosis). We were told at that time that her kidneys would probably fail within 10 years, 15 at the longest. She made it 11 years, so we'll take that all day long. She also has a white blood cell disorder called Chronic Granulomatous Disease. The two disorders are extremely rare and have never been seen together before. Trust me - we've even spoken to and sent loads and loads of information to the NIH and they have never seen anything quite like her.
I'm a single mom and an RN and haven't been able to work since this happened. I'm her only caregiver, transporter, medication and diet enforcer, private home health nurse, coordinator of appointments, dressing changer, and all of the things. She has dialysis 3 days a week (it's a 89 mile round trip to the facility), frequent doctors appointments and, bless her heart, has had more complications and unexpected surgeries than any one human should ever have to endure. Every time that I think that I can commit to working somewhere - there is some kind of crazy complication that typically involves the hospital or operating room.
It has been a very long almost 5 years of hospitalizations, doctors appointments, surgeries, procedures, labs, scans, pokes, prods, bruises, scars, blood, sweat and tears. She was blessed to receive a new kidney in August 2019, but she lost it (it actually ruptured) just 3 days later. The transplant team had never seen anything like it. And now - over a year later - we still have no answers. The transplant center was so overwhelmed by her that they basically said that "she's too hard" and recommended that we seek a second opinion. She had been accepted and we had an appointment for an eval right when Covid-19 reared it's very ugly head. Her physicians and I have all agreed that she is just too high risk to even remotely attempt a transplant at this time. After someone receives a new organ their immune system is essentially completely shut down to prevent rejection. This is just not something that any of us feel is worth the risk. There is just still too much that is unknown about this virus. So - we're in a total holding pattern. And even though, as an RN, I am considered absolutely essential right now - we are also all in agreement that it's highly inadvisable that I risk exposure. So - we wait.
I cannot even begin to express to you the frustration that we're all feeling. I had just recently closed our prior GoFundMe account as 1) it expired, and 2) I honestly thought that we were going to be ok. Well - we're not ok. I have recently lost approximately $1200 in income/support and it has left me in a position of not being able to pay several bills, rent being the most important.
We have been blessed over the past 5 years to be the recipients of the most overwhelming generosity and the thought of asking for more is absolutely nauseating. We thank you in advance for anything that you're able to do.
In Him we remain -
Janet, Brighton, Trevor & Daniel
Organizer
Janet Trowbridge
Organizer
Forney, TX
