Jennifer & Drew Mace's Medical Fund
Donation protected
My name is Alexis and I am friends with a wonderful woman named Jennifer Mace. We attended highschool together but lost track of one another only to find each other on Facebook a few years ago.... Since then I have followed her story. She is married to a wonderful man, Dave and together they have Drew. Drew is a precious little guy with an amazing smile and gorgeous red hair who recently celebrated his 7th birthday. He's extremely bright and enjoys playing on his tablet and sending out messages to apps when he detects an error on their part as he recently did with google maps! hahaha
My interest and love began for Drew when I realized through Jennifer's posts on facebook that he was Autistc. I have a brother who suffers greatly from Autism and I have seen first hand the pains he has endured throughout his life so I believe this is why I followed closely to the things that I saw Jennifer post about her son. Unfortunately Drew is not only Autistic but he is now suffering from many other things and needs a ton of medical testing to fully diagnose his health issues. Jennifer has done more research throughout her sons life than I'm guessing some medical experts have done. She recently attended a medical conference which discussed many of the issues that Drew is now facing. She actually found a doctor at the conference that she was able to talk to and set up a medical appointment with where they will finally be seen in August. This is all amazing news but then comes that bad part.... The astronomical medical fee's. Even though they have medical insurance, the fee's are out there and this family has no idea how they are going to be able to afford them.
Then comes the other shocker that Jennifer is now finding through her research that alot of Drew's medical problems are most likely genetic and come from her. Jennifer is in just as much need to have testing done to find out about her health issues as Drew is but of course her main focus is on him. This is obviouly how most mothers would feel but as an outsider looking in, I feel that if her health is not taken care of properly, how will she take care of Drew? I think a fitting analogy to state the importance of this is when you first board an airplane and they list all the saftey precautions. They make sure to tell all of the parents that should there be a loss in cabin pressure causing the masks to come down, you must first put your mask on and only after then may you help your child with their mask.
Jennifer is an amazingly strong woman. She takes care of their many dogs and chickens and loves coming up with new Mcguyver tactics to improve the living conditions of her animals. I honestly have no idea how she has the energy to do all that she does knowing how much she may be suffering from her own health issues. I recently messaged her to see how things were going with her and Drew and also to ask how things went at the medical conference she had attended. This is the message that I received back from her which greatly explains why I have decided to create this page for her and Drew.
"It's so hard because Drew "LOOKS" healthy and happy... But the sad truth is that he's a very sick little boy. He has a lot going on that we KNOW we can help make better, but we need the doctors who know how to treat him. His immune system is compromised and he seems to be constantly fighting different illnesses. Currently he is consumed by a Pneumococcal infection that has been going on for about two years, different strains. Any time he gets one of these illnesses, it causes him to have a PANS "flare", which causes debilitating OCD, anxiety, rage, phobias, motor and vocal tics, ADHD, incontinence, etc. To make that worse, his immunocompromised body has (just in the past 2 1/2 years) been infected with Coxsackie Virus, Parvovirus B19, HHV-6 (Rosiola), multiple strep infections, Pneumococcal, H-Influenza B, and so on. With each infection, he goes through emotional, psychological HELL. He also has 2 MTHFR mutations, so his body doesn't properly use B12 or Folate, nor can he clear his body of toxins. He has some other genetic issues that have been looked into via MRI and Holter (cardiac) monitoring, which FORTUNATELY, have been "clear" to date. He needs a repeat EEG because of some questionable findings on his initial EEG, and it is with almost complete certainty that he has Lyme disease, as do I. My fear is that his Lyme is congenital and mine is chronic based on my long-standing symptoms. Drew also has histamine and mast cell issues and possible mitochondrial disease (which I likely do as well, simply because the typical/standard mode of transmission is via the mother)....
Dr. Trifiletti is the best in the country for treating PANDAS/PANS.... $400 (20 min follow up)
Dr. O'Hara is the best WITH ASD and PANDAS/PANS...
($1,800 consult) in CT.
Dr. DeMio specializes in ASD and the Lyme link... ($399 /hr. Consult $800)
And I'm HOPING one of them will be helpful with looking into the mitochondrial dysfunction.
I just scheduled Drew and myself for an appointment with one of the docs that spoke at the conference I attended this weekend. We have an appt in August. Not even considering the cost of travel to Cleveland, the appointments is $800.00 EACH. The follow up will be $399/hr for each of us. The testing is $1194.00 EACH.
THEN.... He needs to see a specialist in CT who charges $1800 for consult.... I have no idea how to come up with this money. I don't understand how this happens when we have insurance!!!!
Has your brother ever been tested for Lyme? I spoke with a Lyme doc at the conference and he's convinced Drew has Lyme. He's the one I scheduled with. I'm sure I have Lyme, too, but I'm thinking about just having Drew tested and seen. He's my priority. Sorry to ramble on. Just so overwhelmed."
After Jen wrote this message to me and I read it to my husband, I made a decision that very day that I had to do something. Not only is all of this going on but this is a family that has had quite a bit of bad luck lately. Their doggie Harley recently passed away, Jen just had a tumor removed from her arm that they're hoping is benign, and now she's facing a cyst on her foot. Even with all of this bad, she still creates a warm and loving environment for all of those around her and manages to have a smile on her face while she continues to do so much for others.
It would mean the world to me to see these two be able to get the medical care that they are so desperately in need of. Please donate anything that you can... Anything helps when people come together for those that are in need. Thank you!
My interest and love began for Drew when I realized through Jennifer's posts on facebook that he was Autistc. I have a brother who suffers greatly from Autism and I have seen first hand the pains he has endured throughout his life so I believe this is why I followed closely to the things that I saw Jennifer post about her son. Unfortunately Drew is not only Autistic but he is now suffering from many other things and needs a ton of medical testing to fully diagnose his health issues. Jennifer has done more research throughout her sons life than I'm guessing some medical experts have done. She recently attended a medical conference which discussed many of the issues that Drew is now facing. She actually found a doctor at the conference that she was able to talk to and set up a medical appointment with where they will finally be seen in August. This is all amazing news but then comes that bad part.... The astronomical medical fee's. Even though they have medical insurance, the fee's are out there and this family has no idea how they are going to be able to afford them.
Then comes the other shocker that Jennifer is now finding through her research that alot of Drew's medical problems are most likely genetic and come from her. Jennifer is in just as much need to have testing done to find out about her health issues as Drew is but of course her main focus is on him. This is obviouly how most mothers would feel but as an outsider looking in, I feel that if her health is not taken care of properly, how will she take care of Drew? I think a fitting analogy to state the importance of this is when you first board an airplane and they list all the saftey precautions. They make sure to tell all of the parents that should there be a loss in cabin pressure causing the masks to come down, you must first put your mask on and only after then may you help your child with their mask.
Jennifer is an amazingly strong woman. She takes care of their many dogs and chickens and loves coming up with new Mcguyver tactics to improve the living conditions of her animals. I honestly have no idea how she has the energy to do all that she does knowing how much she may be suffering from her own health issues. I recently messaged her to see how things were going with her and Drew and also to ask how things went at the medical conference she had attended. This is the message that I received back from her which greatly explains why I have decided to create this page for her and Drew.
"It's so hard because Drew "LOOKS" healthy and happy... But the sad truth is that he's a very sick little boy. He has a lot going on that we KNOW we can help make better, but we need the doctors who know how to treat him. His immune system is compromised and he seems to be constantly fighting different illnesses. Currently he is consumed by a Pneumococcal infection that has been going on for about two years, different strains. Any time he gets one of these illnesses, it causes him to have a PANS "flare", which causes debilitating OCD, anxiety, rage, phobias, motor and vocal tics, ADHD, incontinence, etc. To make that worse, his immunocompromised body has (just in the past 2 1/2 years) been infected with Coxsackie Virus, Parvovirus B19, HHV-6 (Rosiola), multiple strep infections, Pneumococcal, H-Influenza B, and so on. With each infection, he goes through emotional, psychological HELL. He also has 2 MTHFR mutations, so his body doesn't properly use B12 or Folate, nor can he clear his body of toxins. He has some other genetic issues that have been looked into via MRI and Holter (cardiac) monitoring, which FORTUNATELY, have been "clear" to date. He needs a repeat EEG because of some questionable findings on his initial EEG, and it is with almost complete certainty that he has Lyme disease, as do I. My fear is that his Lyme is congenital and mine is chronic based on my long-standing symptoms. Drew also has histamine and mast cell issues and possible mitochondrial disease (which I likely do as well, simply because the typical/standard mode of transmission is via the mother)....
Dr. Trifiletti is the best in the country for treating PANDAS/PANS.... $400 (20 min follow up)
Dr. O'Hara is the best WITH ASD and PANDAS/PANS...
($1,800 consult) in CT.
Dr. DeMio specializes in ASD and the Lyme link... ($399 /hr. Consult $800)
And I'm HOPING one of them will be helpful with looking into the mitochondrial dysfunction.
I just scheduled Drew and myself for an appointment with one of the docs that spoke at the conference I attended this weekend. We have an appt in August. Not even considering the cost of travel to Cleveland, the appointments is $800.00 EACH. The follow up will be $399/hr for each of us. The testing is $1194.00 EACH.
THEN.... He needs to see a specialist in CT who charges $1800 for consult.... I have no idea how to come up with this money. I don't understand how this happens when we have insurance!!!!
Has your brother ever been tested for Lyme? I spoke with a Lyme doc at the conference and he's convinced Drew has Lyme. He's the one I scheduled with. I'm sure I have Lyme, too, but I'm thinking about just having Drew tested and seen. He's my priority. Sorry to ramble on. Just so overwhelmed."
After Jen wrote this message to me and I read it to my husband, I made a decision that very day that I had to do something. Not only is all of this going on but this is a family that has had quite a bit of bad luck lately. Their doggie Harley recently passed away, Jen just had a tumor removed from her arm that they're hoping is benign, and now she's facing a cyst on her foot. Even with all of this bad, she still creates a warm and loving environment for all of those around her and manages to have a smile on her face while she continues to do so much for others.
It would mean the world to me to see these two be able to get the medical care that they are so desperately in need of. Please donate anything that you can... Anything helps when people come together for those that are in need. Thank you!
Organizer and beneficiary
Alexis Giblin Nizer
Organizer
Middle River, MD
Jennifer Mace
Beneficiary