Medical Funds For My Mom
Donation protected
**UPDATE DECEMBER 2019**
My Mom is (finally!!) back home! We were hopeful following the Stem Cell Transplant but the final result was that it did not fully do what we had hoped (return her blood to normal).
She is now on an at-home treatment plan of another kind of Chemotherapy, and so far this one looks like it is working!
My Dad was able to complete the renovations on the house so she has a raised floor, hospital bed that can raise and lower, and a full bathroom with a wheelchair-accessible shower.
There was a lot of difficulty with the insurance company in getting her a wheelchair, but that was pushed through by my Dad and now she has a chair that she is able to get around in and is as speedy in it as Professor X from the X-Men!
While there are still a few repairs needed, the wheelchair van is running and the front path to the house was completed and so it is now wide enough for her chair to get to the van to go to Doctor appointments.
More info below:
**UPDATE JUNE 2019**
After almost 2 months at Columbia in NYC, my Mom has completed the Chemotherapy and Stem Cell Transplant and is now in an acute rehab center as she continues to recover!
Thank you to all those who have supported my Mom and Dad during this time, so that my Mom can focus on recovering, while my Dad is able to be by her side and help her through this process.
I originally posted that after about a year of hospitalizations and many, many tests, my Mother was diagnosed with a very very rare condition, called "SLONM with MGUS". The treatment for this involves full chemotherapy to destroy her bone marrow and then regrow it from stem cells they harvest before the chemo.
For those who know her, you know how much she loves what she does, and that through all of this, she's able to continue to help and to work as much as she can.
But she (and all of us!) would love to help her get back on her feet and out of her wheelchair and back to work and her life full time. (And again for those who know her, you know that it is totally her to put "back to work" as her top priority! She truly loves helping people and that is one of my favorite things about her).
This treatment is extremely expensive. She still has to undergo the chemo, and recovery.
My Mother has been working part time through all of this over the last few years, and has only stopped working when she had to start the stem cell harvest, Chemo, and stem cell transplant to replace her bone marrow.
The house I grew up in has been fully renovated by my father, making it ADA accessible, but the sidewalk still needs to be redone to accommodate a wheelchair and the wheelchair van needs repairs.
If you know my parents, you know how hard they work, and how endlessly they have poured themselves into being there for literally the entire world. They are incredible and keeping up with all of their bills, but I want to help lighten the load so my Mom can focus on her treatments and recovery and my Dad can keep taking care of her and have an aid come in to help so he can get some sleep!
You also know that they never ask for help. But I want to give it to them <3
For the full medical info:
Her diagnosis is a combination of a neuromuscular disorder, "SLONM" (sporadic late onset nemaline myopathy) and a hematological disorder (MGUS).
Myopathy is a muscle disease where your muscles degenerate and stop working. This happens to be a proximal myopathy, so the muscles closer to the center of your body (neck, shoulders, back, hips,) go on strike first. If not handled, yes it affects swallowing, lungs, heart. Your further muscles, hands, and feet, are fine the longest.
"SLONM" stands for "Sporadic" (in that it only occurs sporadically in the population) "Late-Onset" (meaning it happens as an adult instead of as a child, which is very lucky in this case, as it is deadly when occurring in newborns). "Nemaline Myopathy" (meaning muscles have scar tissue called "nemaline rods" which can be seen through a microscope after a muscle biopsy. "Nemaline" is from a Greek word meaning threads, because the scars look like threads and make it like an old rubber band that can't stretch so doesn't work right).
"MGUS" stands for "Monoclonal Gammopathy" (an abnormal protein antibody found in plasma, the liquid part of your blood not the energy that powers a Starship) "U.S." (of unspecified significance, because it may mean not much of anything. When first found, if that person has no symptoms, and it stays as a low percent, it is not a problem. What can happen however is the abnormal antibodies can start attacking the muscles in a type of autoimmune reaction, poking holes in the muscles which get filled with scar tissue. Thus, the nemaline rods).
To fully diagnose the condition a bone marrow biopsy is needed. If there's 10% to 30% of the M protein, it is called smoldering myeloma, a precursor to cancer. Over 30% and the person has multiple myeloma.
We are very lucky in that unless the neurologist or orthopedist who diagnoses the condition knows to consult with a hematologist to see if the MGUS component is present, there is no door to a treatment. The current treatment belongs in the sphere of the hematologist / oncologist, which is where she is currently headed.
The treatment is an autologous stem cell transplant (meaning they harvest her own stem cells and give them back to her) along with chemotherapy which handles the Rogue abnormal antibodies.
Once the antibodies are no longer there to attack the muscles, the muscle cells can regenerate and grow back normal muscles and there is recovery.
My Mom is (finally!!) back home! We were hopeful following the Stem Cell Transplant but the final result was that it did not fully do what we had hoped (return her blood to normal).
She is now on an at-home treatment plan of another kind of Chemotherapy, and so far this one looks like it is working!
My Dad was able to complete the renovations on the house so she has a raised floor, hospital bed that can raise and lower, and a full bathroom with a wheelchair-accessible shower.
There was a lot of difficulty with the insurance company in getting her a wheelchair, but that was pushed through by my Dad and now she has a chair that she is able to get around in and is as speedy in it as Professor X from the X-Men!
While there are still a few repairs needed, the wheelchair van is running and the front path to the house was completed and so it is now wide enough for her chair to get to the van to go to Doctor appointments.
More info below:
**UPDATE JUNE 2019**
After almost 2 months at Columbia in NYC, my Mom has completed the Chemotherapy and Stem Cell Transplant and is now in an acute rehab center as she continues to recover!
Thank you to all those who have supported my Mom and Dad during this time, so that my Mom can focus on recovering, while my Dad is able to be by her side and help her through this process.
I originally posted that after about a year of hospitalizations and many, many tests, my Mother was diagnosed with a very very rare condition, called "SLONM with MGUS". The treatment for this involves full chemotherapy to destroy her bone marrow and then regrow it from stem cells they harvest before the chemo.
For those who know her, you know how much she loves what she does, and that through all of this, she's able to continue to help and to work as much as she can.
But she (and all of us!) would love to help her get back on her feet and out of her wheelchair and back to work and her life full time. (And again for those who know her, you know that it is totally her to put "back to work" as her top priority! She truly loves helping people and that is one of my favorite things about her).
This treatment is extremely expensive. She still has to undergo the chemo, and recovery.
My Mother has been working part time through all of this over the last few years, and has only stopped working when she had to start the stem cell harvest, Chemo, and stem cell transplant to replace her bone marrow.
The house I grew up in has been fully renovated by my father, making it ADA accessible, but the sidewalk still needs to be redone to accommodate a wheelchair and the wheelchair van needs repairs.
If you know my parents, you know how hard they work, and how endlessly they have poured themselves into being there for literally the entire world. They are incredible and keeping up with all of their bills, but I want to help lighten the load so my Mom can focus on her treatments and recovery and my Dad can keep taking care of her and have an aid come in to help so he can get some sleep!
You also know that they never ask for help. But I want to give it to them <3
For the full medical info:
Her diagnosis is a combination of a neuromuscular disorder, "SLONM" (sporadic late onset nemaline myopathy) and a hematological disorder (MGUS).
Myopathy is a muscle disease where your muscles degenerate and stop working. This happens to be a proximal myopathy, so the muscles closer to the center of your body (neck, shoulders, back, hips,) go on strike first. If not handled, yes it affects swallowing, lungs, heart. Your further muscles, hands, and feet, are fine the longest.
"SLONM" stands for "Sporadic" (in that it only occurs sporadically in the population) "Late-Onset" (meaning it happens as an adult instead of as a child, which is very lucky in this case, as it is deadly when occurring in newborns). "Nemaline Myopathy" (meaning muscles have scar tissue called "nemaline rods" which can be seen through a microscope after a muscle biopsy. "Nemaline" is from a Greek word meaning threads, because the scars look like threads and make it like an old rubber band that can't stretch so doesn't work right).
"MGUS" stands for "Monoclonal Gammopathy" (an abnormal protein antibody found in plasma, the liquid part of your blood not the energy that powers a Starship) "U.S." (of unspecified significance, because it may mean not much of anything. When first found, if that person has no symptoms, and it stays as a low percent, it is not a problem. What can happen however is the abnormal antibodies can start attacking the muscles in a type of autoimmune reaction, poking holes in the muscles which get filled with scar tissue. Thus, the nemaline rods).
To fully diagnose the condition a bone marrow biopsy is needed. If there's 10% to 30% of the M protein, it is called smoldering myeloma, a precursor to cancer. Over 30% and the person has multiple myeloma.
We are very lucky in that unless the neurologist or orthopedist who diagnoses the condition knows to consult with a hematologist to see if the MGUS component is present, there is no door to a treatment. The current treatment belongs in the sphere of the hematologist / oncologist, which is where she is currently headed.
The treatment is an autologous stem cell transplant (meaning they harvest her own stem cells and give them back to her) along with chemotherapy which handles the Rogue abnormal antibodies.
Once the antibodies are no longer there to attack the muscles, the muscle cells can regenerate and grow back normal muscles and there is recovery.
Organiser
Koury Lindeman
Organiser
Spring Valley, NY
