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Hi. This is my 18yo son, Nicholas Benazeraf. A few days after his 18th birthday, he was diagnosed with ulcerative colitis. It is a very nasty disease, one that he will now live with for the rest of his life.
To save you a ton of reading-
We're hoping to find kind, generous people to help us with our medical bills. It's gotten really expensive, really quick! I have good insurance, but even with that, the bills rack-up fast. At this point, we're looking for a new doctor and that will be $2500-3000 right off the bat. Again. We're also concerned he will need to be kept as an in-patient, since the new doc will need him off all his medication for at least a couple weeks prior to the new colonoscopy; I don't know that we would be able to manage this alone at home.
I promise full transparency with all funds; I absolutely do not look to profit in any way, shape, or form. I just want my son to get back to a relatively normal life.
Now, the details...
Nick was a preemie baby, born at 36 weeks. But, he came out scrappin'! No incubation or anything special, he was put in the normal nursery with all the other babies and came home with Mom after three days.
Growing up, Nick has always been a natural leader and very active. He was always an honor-roll student up until high-school, but still maintained good grades at that point. He was in ROTC and was often promoted before his peers and others with more time. He always had lots of friends and was always popular. This UC has really changed his life...
We found someone we thought was a great doctor, but he's turned out to be a huge disappointment; his answer always seems to be more steroids. Poor kid has had a lifetime's worth of steroids in the last six or eight months. Even the steroids are starting to fail. As expected, we started him on the least aggressive medication, stepped up from there when it failed, and so on. We were so hopeful after the first dose of his current medication, taken intravenously. But even it seems to be failing now. We've decreased the intervals between doses and increased the dosage size, but the first of those isn't for another two weeks (8/20/2020). We're hoping for the best, of course, but it's going to be a rough two weeks for him; he's already feeling terrible, only has a couple more doses of steroids, and I'm sure time is moving rather slow for him right now.
He recently got a job as a maintenance assistant, but that lasted one day. When I picked him up from work, he had his shoes and socks off and his pants rolled up to his knees. He hobbled over to the truck with crazy-swollen feet and ankles and red spots all over from the knees down. Appears his medication doesn't like the heat... His doctor's answer? Not really my field, see a dermatologist. Right, because it wouldn't have anything to do with the six different meds or the steroids he's on...
He was in the ER six times in about an eight-week period. One of those times, he was almost in need of a blood transfusion from all the blood he loses with every bowel movement. His HGB (red cells) have been as low as 8.1; normal is 12-15.
Between six different medications for the last 10 months, a colonoscopy, special dietary needs, doctors visits... it's definitely taken its toll. And we're just getting started, unfortunately, with no real end to the journey...
If you've read this far- thank you very much. There's so much more to it. Losing his new job was a real downer- that was supposed to be his new (used) car and his first step to independence. He has good days and bad days, but honestly, lately, probably more bad days than good. It breaks our hearts to see our son like this. It's clear there's some depression going on, he has but a few friends left since he can't be the super-out going kid he used to be (even though I tell him, those are you TRUE friends, let's be honest- he's an 18 year old... quantity is important, too!).
I'm happy to give more detail to anyone that asks. As I said, this is ALL for Nicholas. He had such a promising future, so much potential. He still has all of this but the UC? We've been chasing it since the diagnosis; if we could just get ahead of it, it would be a whole new world for him.
One last thing- no one in the house has facebook or twitter or any other social media- please, help us get the word out! Send links to us to everyone you know!
Thank you to everyone, whether you can help or not. We wish you all the best.
Sincerely,
Eric and Debra Benazeraf
To save you a ton of reading-
We're hoping to find kind, generous people to help us with our medical bills. It's gotten really expensive, really quick! I have good insurance, but even with that, the bills rack-up fast. At this point, we're looking for a new doctor and that will be $2500-3000 right off the bat. Again. We're also concerned he will need to be kept as an in-patient, since the new doc will need him off all his medication for at least a couple weeks prior to the new colonoscopy; I don't know that we would be able to manage this alone at home.
I promise full transparency with all funds; I absolutely do not look to profit in any way, shape, or form. I just want my son to get back to a relatively normal life.
Now, the details...
Nick was a preemie baby, born at 36 weeks. But, he came out scrappin'! No incubation or anything special, he was put in the normal nursery with all the other babies and came home with Mom after three days.
Growing up, Nick has always been a natural leader and very active. He was always an honor-roll student up until high-school, but still maintained good grades at that point. He was in ROTC and was often promoted before his peers and others with more time. He always had lots of friends and was always popular. This UC has really changed his life...
We found someone we thought was a great doctor, but he's turned out to be a huge disappointment; his answer always seems to be more steroids. Poor kid has had a lifetime's worth of steroids in the last six or eight months. Even the steroids are starting to fail. As expected, we started him on the least aggressive medication, stepped up from there when it failed, and so on. We were so hopeful after the first dose of his current medication, taken intravenously. But even it seems to be failing now. We've decreased the intervals between doses and increased the dosage size, but the first of those isn't for another two weeks (8/20/2020). We're hoping for the best, of course, but it's going to be a rough two weeks for him; he's already feeling terrible, only has a couple more doses of steroids, and I'm sure time is moving rather slow for him right now.
He recently got a job as a maintenance assistant, but that lasted one day. When I picked him up from work, he had his shoes and socks off and his pants rolled up to his knees. He hobbled over to the truck with crazy-swollen feet and ankles and red spots all over from the knees down. Appears his medication doesn't like the heat... His doctor's answer? Not really my field, see a dermatologist. Right, because it wouldn't have anything to do with the six different meds or the steroids he's on...
He was in the ER six times in about an eight-week period. One of those times, he was almost in need of a blood transfusion from all the blood he loses with every bowel movement. His HGB (red cells) have been as low as 8.1; normal is 12-15.
Between six different medications for the last 10 months, a colonoscopy, special dietary needs, doctors visits... it's definitely taken its toll. And we're just getting started, unfortunately, with no real end to the journey...
If you've read this far- thank you very much. There's so much more to it. Losing his new job was a real downer- that was supposed to be his new (used) car and his first step to independence. He has good days and bad days, but honestly, lately, probably more bad days than good. It breaks our hearts to see our son like this. It's clear there's some depression going on, he has but a few friends left since he can't be the super-out going kid he used to be (even though I tell him, those are you TRUE friends, let's be honest- he's an 18 year old... quantity is important, too!).
I'm happy to give more detail to anyone that asks. As I said, this is ALL for Nicholas. He had such a promising future, so much potential. He still has all of this but the UC? We've been chasing it since the diagnosis; if we could just get ahead of it, it would be a whole new world for him.
One last thing- no one in the house has facebook or twitter or any other social media- please, help us get the word out! Send links to us to everyone you know!
Thank you to everyone, whether you can help or not. We wish you all the best.
Sincerely,
Eric and Debra Benazeraf