Eli's Battle - First in history!
Donation protected
Hello kind friends, I started this fund to allay expenses for medical treatment and handicap impediments and to allow Eli to afford surgeries, physical therapy, medication and a home for his fledgling family. The doctor’s don’t know much but will need to fix dozens of different issues including damaged (activated pain) nerves and aesthetics like eye, face, and nose. I am not taking any money from this and with the family’s permission working to enable this amazing man a normal life, for him and his family. I have never done something like this before so forgive me in advance if anything is unclear and please email for more details or to learn how to help. The doctor’s believe that the long term requisites of treatment include more than 30 different surgeries and therapies to get him to optimal health. Thank you for support and empathy.
For those that don’t know him personally, Eli was a huge influence on all our lives and I know many people who can say with me that we wouldn’t be where we are without his influence. Before this whole calamity, he along with his family was selflessly involved in many acts of kindness and aid. He would teach and hire teens at risk putting many of them back on the right path. He is honestly of the most amazing people we know galvanizing us all to be more proactive towards righteous causes. Any time I would be with him his phone would ring from someone with a problem. Those of you who know Eli know how strong he was in mind, body, and spirit allowing him to pour kindness and assistance on those that needed it most. It’s now our time to give them back to him when he needs it most.
It started in 2014 when we got news that Eli wasn't feeling well and had to go to the emergency room close to midnight. By the morning he was already home, but the doctors didn't find anything significantly wrong with him except for his blood counts were quite low. He was referred to multiple doctors including a hematologist. After seeing other specialists, the hematologist ran multiple blood tests and eventually a bone marrow biopsy through several evaluations resulting in the diagnosis of a disease that's only found in five to ten thousand people per year in the world called severe aplastic anemia. All of this occurred just two years into his marriage when he had a small young baby and ran a business to support them. At this point he was in the hospital almost daily to get blood transfusions but he required a bone marrow transplant immediately so that he would have an 80% chance of living, as his blood counts were dropping dangerously fast, and his immune system already non-existent.
After facing the options of high-dose chemotherapy and full body radiation in Hopkins they got spiritual guidance to travel to Israel and be healthy making it a clear decision. He landed in the immunotherapy capital, Hadassah Ein kerem hospital where they can perform the same transplant without the radiation limiting it only to the high-dose chemo due to breakthrough technology not available in the U.S.A.. This option however, entailed him leaving behind his family and fledgling businesses to go to a foreign country where he had no doctor or insurance under very severe circumstances. Aplastic Anemia is an extremely rare disease in which there is complete loss of bone barrow which produces the red blood cells white blood cells, platelets, etc. The effects included severe headaches, dizziness, infections, bruising, fatigue, lack of immune system, lack of clotting, and many other functions which happen only through blood, ultimately leading to death if untreated. Upon arriving he was immediately admitted to the ER and given emergency blood transfusions. He had a sibling who was a perfect match allowing him to have a bone marrow transplant. After high dose chemo, and painful arduous treatments, the transplant was successful although with multiple complications and setbacks. However the pain he had in the sinuses still did not dissipate but was left misdiagnosed as sinusitis for many months leading up to the transplant. When he finally underwent the transplant it was determined that he had a highly invasive fungal infection called mucormycosis which had by then eaten and completely obliterated his sinuses, brain, eyes, nose, face, and skull base. This infection carries a 100% mortality rate in most circumstances, but certainly his being immuno-compromised. However, to add even more damage, this was already left for many months misdiagnosed and was in very late stages after the ravaging effects of high dose chemotherapy and the lack of an immune system. This according to the doctors was a sure definite death sentence as the fungus had already consumed a large percent of the frontal lobe of his brain. There wasn’t a doctor in the world that gave him a chance to live.
When we got the news we were all devastated and were doing everything possible to try to save him whether by praying doing good things for other people or medical intervention. Put in isolated palliative care, they attempted last-ditch antifungals, which caused seizures, heart irregularities, kidney failure, and various other toxic side effects. After too many close calls so to speak they put him on standard oral antifungals (Posaconazole) which are completely ineffective in his situation. We rushed to speak with the top leaders in oncological infectious diseases which recommended another (patented) last-ditch medication which costs a fortune. This medication (Ambisome) cost $1,600 per dose where he was but we were told that if anything could work or even extend his life minimally, it would be this. After a few weeks of still being with us the doctors recommended continued treatment with this medication just in case we see a miracle. Diagnostics were extremely grim, MRIs, like the one included below were showing a large portion of the frontal lobe of the brain consumed by the fungus. A few times a week neurologists would come by and be astonished that he could communicate be conscious or even have any cognitive function. The very fact that he was alive with that amount of brain infection was impossible in their eyes. It was all clearly an open miracle. We bit our nails in worry as there was little for us to do. Just when we thought things had hit their head, we received word from the hospital that he came down with a secondary Staph. infection in his head. This required doing an emergency evisceration of the left eye even as he was already blind in that eye from the original Mucormycosis infection. This misfortune was so much to bear on the young family as his wife was running around pregnant between care for their child, staying in the hospital, and appointments with specialists. Due to placement in isolation, he didn’t get to see his one year old only child for half a year, missing many of the big milestones. In addition his immediate family wasn't able to be with him constantly, save rotational visits and a brother staying on. After months of the toxic antifungal treatment the MRIs showed signs of the fungus slowing down. Throughout this time he acquired complications from the original Aplastic Anemia, and being post-transplant (gvhd, pneumonia multiple times, shingles etc.). The doctors could tell us nothing for they never saw survival under these circumstances. As the time progressed his wife was getting further into pregnancy requiring for there to be a whirlwind of help to care for her young boy and help her sick husband. In March, while his condition miraculously took a turn for the good his wife came into to the hospital to have their son, there were undercurrents in the ward of him maybe being able to sleep at home sometimes. As the new boy came into the world Eli came through and started showing signs of recovery. The next weekend he was able to spend time with the newborn baby outside the hospital ward. From across the globe people rejoiced and doubled their efforts and prayers. Within a short time he was finally discharged, yet was required to go to the hospital every day for monitoring, lab-work, and to receive iv medication which continued to wreak havoc on the electrolytes making acute liver and kidney failure a part of routine life.
After ten months of being outpatient and receiving a cocktail of medications, his family searched for options to get him out of the danger zone. They booked appointments for the biggest doctor’s in the skull base field. Although it was highly dangerous for Eli to fly due to the skull base holding his brain being completely necrotic and crumbling leaving a high possibility of CSF (Cerebral Spinal Fluid) leaking, the doctors felt it was more unsafe to leave it untreated. Arriving back safely they spent thousands of dollars meeting with specialists, not one of which was able to do the job (including Johns Hopkins, Cleveland Clinic, Harvard’s Brigham and Women, etc) other than the father of the field, Dr. Sneiderman of UPMC. Removal of all the necrotic bone and tissue, in addition to rebuilding his entire skull base, sinuses, face, eye, and nose would be a dangerous and complicated 10-12 hour surgery performed by the heads of Neurosurgery, ENT , and Eye Institute, (Dr.’s Gardner, Sneiderman, Steffko) and over 50 additional other doctors. In a feat that astonished the surgeons the necrotic bone fell out instead of crumbling had it
been drilled, which was the plan. This turned to be a huge miracle, as it turned out when it was sent to the lab that the bone was still full of live infection, which they were not aware of before. They believed the fungus was dead by then, so they felt able to drill, but had it happened, it may have spread the fungus to his entire brain---worse than before. Unfortunately the insurance balked at paying for this couple hundred thousand dollar surgery. That surgery was just the beginning of the operations that are needed to be done if he can have a chance at rebuilding his health. Treatments and operations over the last two years have saddled the family with millions in expenses in addition to having to sell their house towards it. They currently don’t have a home, and due to the enormous cost of treatment cant afford a home for his family. There were and still are many medications that they must pay out of pocket either because they are not available locally, or not covered which at times cost tens of thousands of dollars a week. Even until this day, he requires medications and treatments not covered which add up to at least hundreds of thousands of dollars for this year alone, despite his significant improvement. He was there for me and all his friends whenever we were in need of anything or going through any rough time. Now he needs our help and care to enable a full recovery physically and financially. He never asked from anyone so I thought we can help make this battle easier for him and his young family. Empower him to beat this battle.
Ps: All of his expenses that I wrote, is what I know of from the time spent near him. However, I’m sure there were many bigger expenses that I don’t know about, as he never wanted to take handouts since this happened, so he didn’t talk about this much outside of his family. The little that I know about is millions of dollars in medical expenses and his business collapse, but we aren’t asking for charity for day to day expenses, as per his request. All we want to do is give him and his family a chance at a normal life, by putting them back on their feet. The enormous expense of raising a family with a handicapped father is more than enough for them to bear on their own. Let’s at least help them with the astronomical debt, medical expenses, and lodging to make an impossible situation, a little more possible.
Thank you so much for your help and generosity, and wishing you a happy and healthy new year. you can PM at any time on gofundme for info or help.
Michael Sakhaei
For those that don’t know him personally, Eli was a huge influence on all our lives and I know many people who can say with me that we wouldn’t be where we are without his influence. Before this whole calamity, he along with his family was selflessly involved in many acts of kindness and aid. He would teach and hire teens at risk putting many of them back on the right path. He is honestly of the most amazing people we know galvanizing us all to be more proactive towards righteous causes. Any time I would be with him his phone would ring from someone with a problem. Those of you who know Eli know how strong he was in mind, body, and spirit allowing him to pour kindness and assistance on those that needed it most. It’s now our time to give them back to him when he needs it most.
It started in 2014 when we got news that Eli wasn't feeling well and had to go to the emergency room close to midnight. By the morning he was already home, but the doctors didn't find anything significantly wrong with him except for his blood counts were quite low. He was referred to multiple doctors including a hematologist. After seeing other specialists, the hematologist ran multiple blood tests and eventually a bone marrow biopsy through several evaluations resulting in the diagnosis of a disease that's only found in five to ten thousand people per year in the world called severe aplastic anemia. All of this occurred just two years into his marriage when he had a small young baby and ran a business to support them. At this point he was in the hospital almost daily to get blood transfusions but he required a bone marrow transplant immediately so that he would have an 80% chance of living, as his blood counts were dropping dangerously fast, and his immune system already non-existent.
After facing the options of high-dose chemotherapy and full body radiation in Hopkins they got spiritual guidance to travel to Israel and be healthy making it a clear decision. He landed in the immunotherapy capital, Hadassah Ein kerem hospital where they can perform the same transplant without the radiation limiting it only to the high-dose chemo due to breakthrough technology not available in the U.S.A.. This option however, entailed him leaving behind his family and fledgling businesses to go to a foreign country where he had no doctor or insurance under very severe circumstances. Aplastic Anemia is an extremely rare disease in which there is complete loss of bone barrow which produces the red blood cells white blood cells, platelets, etc. The effects included severe headaches, dizziness, infections, bruising, fatigue, lack of immune system, lack of clotting, and many other functions which happen only through blood, ultimately leading to death if untreated. Upon arriving he was immediately admitted to the ER and given emergency blood transfusions. He had a sibling who was a perfect match allowing him to have a bone marrow transplant. After high dose chemo, and painful arduous treatments, the transplant was successful although with multiple complications and setbacks. However the pain he had in the sinuses still did not dissipate but was left misdiagnosed as sinusitis for many months leading up to the transplant. When he finally underwent the transplant it was determined that he had a highly invasive fungal infection called mucormycosis which had by then eaten and completely obliterated his sinuses, brain, eyes, nose, face, and skull base. This infection carries a 100% mortality rate in most circumstances, but certainly his being immuno-compromised. However, to add even more damage, this was already left for many months misdiagnosed and was in very late stages after the ravaging effects of high dose chemotherapy and the lack of an immune system. This according to the doctors was a sure definite death sentence as the fungus had already consumed a large percent of the frontal lobe of his brain. There wasn’t a doctor in the world that gave him a chance to live.
When we got the news we were all devastated and were doing everything possible to try to save him whether by praying doing good things for other people or medical intervention. Put in isolated palliative care, they attempted last-ditch antifungals, which caused seizures, heart irregularities, kidney failure, and various other toxic side effects. After too many close calls so to speak they put him on standard oral antifungals (Posaconazole) which are completely ineffective in his situation. We rushed to speak with the top leaders in oncological infectious diseases which recommended another (patented) last-ditch medication which costs a fortune. This medication (Ambisome) cost $1,600 per dose where he was but we were told that if anything could work or even extend his life minimally, it would be this. After a few weeks of still being with us the doctors recommended continued treatment with this medication just in case we see a miracle. Diagnostics were extremely grim, MRIs, like the one included below were showing a large portion of the frontal lobe of the brain consumed by the fungus. A few times a week neurologists would come by and be astonished that he could communicate be conscious or even have any cognitive function. The very fact that he was alive with that amount of brain infection was impossible in their eyes. It was all clearly an open miracle. We bit our nails in worry as there was little for us to do. Just when we thought things had hit their head, we received word from the hospital that he came down with a secondary Staph. infection in his head. This required doing an emergency evisceration of the left eye even as he was already blind in that eye from the original Mucormycosis infection. This misfortune was so much to bear on the young family as his wife was running around pregnant between care for their child, staying in the hospital, and appointments with specialists. Due to placement in isolation, he didn’t get to see his one year old only child for half a year, missing many of the big milestones. In addition his immediate family wasn't able to be with him constantly, save rotational visits and a brother staying on. After months of the toxic antifungal treatment the MRIs showed signs of the fungus slowing down. Throughout this time he acquired complications from the original Aplastic Anemia, and being post-transplant (gvhd, pneumonia multiple times, shingles etc.). The doctors could tell us nothing for they never saw survival under these circumstances. As the time progressed his wife was getting further into pregnancy requiring for there to be a whirlwind of help to care for her young boy and help her sick husband. In March, while his condition miraculously took a turn for the good his wife came into to the hospital to have their son, there were undercurrents in the ward of him maybe being able to sleep at home sometimes. As the new boy came into the world Eli came through and started showing signs of recovery. The next weekend he was able to spend time with the newborn baby outside the hospital ward. From across the globe people rejoiced and doubled their efforts and prayers. Within a short time he was finally discharged, yet was required to go to the hospital every day for monitoring, lab-work, and to receive iv medication which continued to wreak havoc on the electrolytes making acute liver and kidney failure a part of routine life.
After ten months of being outpatient and receiving a cocktail of medications, his family searched for options to get him out of the danger zone. They booked appointments for the biggest doctor’s in the skull base field. Although it was highly dangerous for Eli to fly due to the skull base holding his brain being completely necrotic and crumbling leaving a high possibility of CSF (Cerebral Spinal Fluid) leaking, the doctors felt it was more unsafe to leave it untreated. Arriving back safely they spent thousands of dollars meeting with specialists, not one of which was able to do the job (including Johns Hopkins, Cleveland Clinic, Harvard’s Brigham and Women, etc) other than the father of the field, Dr. Sneiderman of UPMC. Removal of all the necrotic bone and tissue, in addition to rebuilding his entire skull base, sinuses, face, eye, and nose would be a dangerous and complicated 10-12 hour surgery performed by the heads of Neurosurgery, ENT , and Eye Institute, (Dr.’s Gardner, Sneiderman, Steffko) and over 50 additional other doctors. In a feat that astonished the surgeons the necrotic bone fell out instead of crumbling had it
been drilled, which was the plan. This turned to be a huge miracle, as it turned out when it was sent to the lab that the bone was still full of live infection, which they were not aware of before. They believed the fungus was dead by then, so they felt able to drill, but had it happened, it may have spread the fungus to his entire brain---worse than before. Unfortunately the insurance balked at paying for this couple hundred thousand dollar surgery. That surgery was just the beginning of the operations that are needed to be done if he can have a chance at rebuilding his health. Treatments and operations over the last two years have saddled the family with millions in expenses in addition to having to sell their house towards it. They currently don’t have a home, and due to the enormous cost of treatment cant afford a home for his family. There were and still are many medications that they must pay out of pocket either because they are not available locally, or not covered which at times cost tens of thousands of dollars a week. Even until this day, he requires medications and treatments not covered which add up to at least hundreds of thousands of dollars for this year alone, despite his significant improvement. He was there for me and all his friends whenever we were in need of anything or going through any rough time. Now he needs our help and care to enable a full recovery physically and financially. He never asked from anyone so I thought we can help make this battle easier for him and his young family. Empower him to beat this battle.
Ps: All of his expenses that I wrote, is what I know of from the time spent near him. However, I’m sure there were many bigger expenses that I don’t know about, as he never wanted to take handouts since this happened, so he didn’t talk about this much outside of his family. The little that I know about is millions of dollars in medical expenses and his business collapse, but we aren’t asking for charity for day to day expenses, as per his request. All we want to do is give him and his family a chance at a normal life, by putting them back on their feet. The enormous expense of raising a family with a handicapped father is more than enough for them to bear on their own. Let’s at least help them with the astronomical debt, medical expenses, and lodging to make an impossible situation, a little more possible.
Thank you so much for your help and generosity, and wishing you a happy and healthy new year. you can PM at any time on gofundme for info or help.
Michael Sakhaei
Organizer and beneficiary
michael sakhaei
Organizer
Beverly Hills, CA
Eliyahu Khaver
Beneficiary
