Claire Katz's Brain Surgery Fund
Donation protected
My dear friends and family, I’m writing this to humbly ask for your support during a time of crisis for my family. My beautiful wife and soulmate Claire has been suffering from an excruciating facial nerve condition known as Trigeminal Neuralgia. It's widely considered the most painful disease known to human kind. (See links at end of bio) People refer to it as the “Suicide Disease” as the pain is relentless and severe enough for nearly half of the people afflicted with this condition to end their own lives.
Claire also has Fibromyalgia, a severe nerve pain disorder, so on top of the neuralgia she has Fibro which increases her sensitivity to pain exponentially. This combination of conditions is brutal, silent and extremely rare. I’ve watched my sweet wife writhe in agony for hours on end until the tears and emotional exhaustion make her pass out. She then wakes up and goes through it all over again the next day, and the next week and the next month.
Last year Claire had surgery to decompress the Trigeminal nerve and it was a great success. Unfortunately, about 2 months ago, the symptoms have returned to a different part of this nerve. After much consideration, Claire will undergo surgery to remove the pressure on the nerve. We’re blessed to have a world leader in the field performing the operation. He’s a neurosurgeon out of UC Irvine, who literally wrote the book on TN surgery. Microvascular Decompression is a procedure where the brain is exposed and a hole is drilled in the skull to gain access to the nerve. Once the nerve is exposed, the surgeon will unravel the blood vessels wrapped around the nerve, thus relieving the pressure and the pain.
Over the past three years, Claire has had 4 surgeries. She had a double mastectomy, a second reconstructive breast surgery, a C-section as our babies were born 3 months premature and brain surgery for Trigeminal Neuralgia. Unfortunately, this will be Claire’s 11th surgery in her brief 31 years on this planet, more than most of us will endure in our lifetime.
Claire is BRCA1 positive. BRCA is a genetic mutation that is commonly referred to as the breast cancer gene. Claire watched her mother battle cancer at 12 and knew from that point forward that she didn’t want her children to go through that. She made the incredibly brave decision to have surgery, and in doing so became the first woman in her family of 11 women to not have breast cancer. The surgery was immensely painful emotionally and physically, but in the end well worth it. She underwent a second surgery to help reconstruct and shape her breasts 6 months later.
February 4th, 2014 our sweet angels Olivia and Knox were born at 29 weeks, 3 months premature. Olivia weighed 2lbs 11oz and Knox weighed 2lbs 4oz. Both babies were very sick, very small and their lungs were underdeveloped. Knox, however, was much much sicker. My second day of fatherhood, I was pulled away from his incubator and given a talk by their doctor. She said, “Knox is very sick. Probably the sickest child we’ve had in the NICU in the past 6 months. We’ve tried ‘A-Y’ and nothing is working. We’re going to try ‘Z’ but if ‘Z’ doesn’t work we’ll make him comfortable and you can hold him in your arms until he passes”. There are no words to describe my feelings that day, so I’m not even going to try. 3am the next day, emergency surgery to insert a chest tube saved my baby boys life. They were in the NICU for 2 months and 2.5 grueling months respectively. I’m beyond thrilled to report that they are perfectly healthy today, physically and developmentally. They are the light of our lives, our pride and joy and proof that we can get through anything.
A year and half later after 4 months of agony, Claire had her first Trigeminal Neuralgia surgery. While the procedure was successful, the recovery was slow and difficult. A year after that surgery, here we are…staring down the barrel of yet another brain surgery and another long recovery.
During last year’s surgery I was forced to resign from my job after family leave ran out to be here and take care of my family. It may have been a blessing in disguise because I have a job I love for the first time in a long time. I’m not in a position where I’ll be able to take time off to assist in my wife’s recovery as I was last year, which makes this situation that much more dire and terrifying.
I’m a typical guy. I’d rather get lost than ask for directions, I’d rather figure things out on my own instead of reading instructions, and I’d rather fight on my own than ask for help; but this isn’t about me. This is about my wife and especially my children. We have no help, both sets of grandparents live hours away, and very few friends who can help. Outside of our amazing community of neighbors who have been there for us, we’ve been on our own this whole time. During last year’s surgery and the months leading up to it, the babies were much younger, easier and we’re unaware that mommy was sick. This year they know, and it breaks my heart and fills Claire’s with guilt and sadness.
I humbly ask for your help. Money raised will go towards full days at preschool for the twins, and a mother’s helper for Claire when they are home, as she won’t be able to lift them for 2 months post op, and is essentially debilitated by pain currently. It will also help us with the medical bills, which are staggering. Imagine having great insurance and racking up a one million dollar medical bill. Even if you pay 2% copays it ends up being 20K out of pocket. Our copay is significantly more than 2%, our medical bills are well over 4 million dollars, and this is surgery #4 in 3 years. The funds raised will also help us with the cost of living through a long recovery, as well as accommodations in Irvine pre and post op. The money will also go towards transportation for Claire and the kids as she can’t drive now, and won’t be able to for 2 months after surgery.
Claire and I are 2 people who have been together through thick and thin. We’ve battled the worst the world could throw at us. We have stood up, fought and never given up. People have said to us, “you guys are proof that true love exists” and “I didn’t believe in soulmates until I met you two”. We have a special love, special children and unfortunately a special set of challenges. As difficult as this is to share and as hard as it is to ask for help, this full disclosure is a testament how critical our situation is. If you are in a position to help us in this time of need, we’ll be forever grateful and if not, your prayers, well wishes and good vibes are very much appreciated. Any donation, even as small as a dollar, isn’t small to us. Thank you all in advance for reading this and helping our family in this time of need.
Thank you so much,
Michael Katz
Links:
Wikipedia:
https://en.wikipedia.org/wiki/Trigeminal_neuralgia
Trigeminal Neuralgia Association:
http://fpa-support.org/
Recent MSNBC Story Video, “Living with the World’s Most Painful Disease”:
http://www.msnbc.com/msnbc-originals/watch/living-with-the-world-s-most-painful-disease-631913539610?cid=sm_fb
Claire also has Fibromyalgia, a severe nerve pain disorder, so on top of the neuralgia she has Fibro which increases her sensitivity to pain exponentially. This combination of conditions is brutal, silent and extremely rare. I’ve watched my sweet wife writhe in agony for hours on end until the tears and emotional exhaustion make her pass out. She then wakes up and goes through it all over again the next day, and the next week and the next month.
Last year Claire had surgery to decompress the Trigeminal nerve and it was a great success. Unfortunately, about 2 months ago, the symptoms have returned to a different part of this nerve. After much consideration, Claire will undergo surgery to remove the pressure on the nerve. We’re blessed to have a world leader in the field performing the operation. He’s a neurosurgeon out of UC Irvine, who literally wrote the book on TN surgery. Microvascular Decompression is a procedure where the brain is exposed and a hole is drilled in the skull to gain access to the nerve. Once the nerve is exposed, the surgeon will unravel the blood vessels wrapped around the nerve, thus relieving the pressure and the pain.
Over the past three years, Claire has had 4 surgeries. She had a double mastectomy, a second reconstructive breast surgery, a C-section as our babies were born 3 months premature and brain surgery for Trigeminal Neuralgia. Unfortunately, this will be Claire’s 11th surgery in her brief 31 years on this planet, more than most of us will endure in our lifetime.
Claire is BRCA1 positive. BRCA is a genetic mutation that is commonly referred to as the breast cancer gene. Claire watched her mother battle cancer at 12 and knew from that point forward that she didn’t want her children to go through that. She made the incredibly brave decision to have surgery, and in doing so became the first woman in her family of 11 women to not have breast cancer. The surgery was immensely painful emotionally and physically, but in the end well worth it. She underwent a second surgery to help reconstruct and shape her breasts 6 months later.
February 4th, 2014 our sweet angels Olivia and Knox were born at 29 weeks, 3 months premature. Olivia weighed 2lbs 11oz and Knox weighed 2lbs 4oz. Both babies were very sick, very small and their lungs were underdeveloped. Knox, however, was much much sicker. My second day of fatherhood, I was pulled away from his incubator and given a talk by their doctor. She said, “Knox is very sick. Probably the sickest child we’ve had in the NICU in the past 6 months. We’ve tried ‘A-Y’ and nothing is working. We’re going to try ‘Z’ but if ‘Z’ doesn’t work we’ll make him comfortable and you can hold him in your arms until he passes”. There are no words to describe my feelings that day, so I’m not even going to try. 3am the next day, emergency surgery to insert a chest tube saved my baby boys life. They were in the NICU for 2 months and 2.5 grueling months respectively. I’m beyond thrilled to report that they are perfectly healthy today, physically and developmentally. They are the light of our lives, our pride and joy and proof that we can get through anything.
A year and half later after 4 months of agony, Claire had her first Trigeminal Neuralgia surgery. While the procedure was successful, the recovery was slow and difficult. A year after that surgery, here we are…staring down the barrel of yet another brain surgery and another long recovery.
During last year’s surgery I was forced to resign from my job after family leave ran out to be here and take care of my family. It may have been a blessing in disguise because I have a job I love for the first time in a long time. I’m not in a position where I’ll be able to take time off to assist in my wife’s recovery as I was last year, which makes this situation that much more dire and terrifying.
I’m a typical guy. I’d rather get lost than ask for directions, I’d rather figure things out on my own instead of reading instructions, and I’d rather fight on my own than ask for help; but this isn’t about me. This is about my wife and especially my children. We have no help, both sets of grandparents live hours away, and very few friends who can help. Outside of our amazing community of neighbors who have been there for us, we’ve been on our own this whole time. During last year’s surgery and the months leading up to it, the babies were much younger, easier and we’re unaware that mommy was sick. This year they know, and it breaks my heart and fills Claire’s with guilt and sadness.
I humbly ask for your help. Money raised will go towards full days at preschool for the twins, and a mother’s helper for Claire when they are home, as she won’t be able to lift them for 2 months post op, and is essentially debilitated by pain currently. It will also help us with the medical bills, which are staggering. Imagine having great insurance and racking up a one million dollar medical bill. Even if you pay 2% copays it ends up being 20K out of pocket. Our copay is significantly more than 2%, our medical bills are well over 4 million dollars, and this is surgery #4 in 3 years. The funds raised will also help us with the cost of living through a long recovery, as well as accommodations in Irvine pre and post op. The money will also go towards transportation for Claire and the kids as she can’t drive now, and won’t be able to for 2 months after surgery.
Claire and I are 2 people who have been together through thick and thin. We’ve battled the worst the world could throw at us. We have stood up, fought and never given up. People have said to us, “you guys are proof that true love exists” and “I didn’t believe in soulmates until I met you two”. We have a special love, special children and unfortunately a special set of challenges. As difficult as this is to share and as hard as it is to ask for help, this full disclosure is a testament how critical our situation is. If you are in a position to help us in this time of need, we’ll be forever grateful and if not, your prayers, well wishes and good vibes are very much appreciated. Any donation, even as small as a dollar, isn’t small to us. Thank you all in advance for reading this and helping our family in this time of need.
Thank you so much,
Michael Katz
Links:
Wikipedia:
https://en.wikipedia.org/wiki/Trigeminal_neuralgia
Trigeminal Neuralgia Association:
http://fpa-support.org/
Recent MSNBC Story Video, “Living with the World’s Most Painful Disease”:
http://www.msnbc.com/msnbc-originals/watch/living-with-the-world-s-most-painful-disease-631913539610?cid=sm_fb
Organizer
Michael Katz
Organizer
Encino, CA
