Splash
New member
Back story-
Since our son was born, he has had numerous health problems that his doctors could not figure out. It started with rashes, then got to where his skin was sloughing off his body. We had to keep him arms and legs wrapped at all times, and he had infection after infection, many of them severe. We were told not to take him outside (sunlight) and to bleach the house top to bottom on a regular basis and bathe him with diluted bleach. He had test after test, getting in touch with his half siblings (from the donor) revealed that ALL of them had the exact same problems and no one knew what it was or how to fix it. Charlie was going to a different doctor every day of the week. We saw every almost every dermatologist in the Tampa Bay area and a few in Orlando, he saw several immunologists, hematologists, oncologists... if it ends in -ologist, he's been there.
His health insurance kicked him once he reached the benefit maximum, and we paid all of his bills until Medicaid would pick him up. Before that we were paying $200/week in copays at least. Add this to the extremely expensive formula he had to have (he didn't have solid foods until over a year, because he couldn't handle them, and Jean could only make so much milk) and we were putting out probably two thousand a month for his medical bills (before Medicaid and WIC kicked in in February). Now we still have to pay for some of his medications that aren't covered, pay for most of the formula (runs about $15/day at this point, since he can now eat some solids), and pay for all the incidentals (wrapping, silver dressing, ointments, chiropractor, etc).
This is all relevant to the story, I swear.
Well, before he was born we had planned on adding on to our house. We live in St. Pete, where all the houses are either very small, or the size of shopping malls. No in between. We do not have a shopping mall house. Now, since our savings were gobbled up by his medical bills, and we then took out more money against the house, we didn't have a lot to work with. We decided to skip it, until we were told Charlie needed to be kept inside and away from other kids. At a time, his immune system was just shot, and sun was making him blister and scab over. So we decided to go just for a sunroom (with heavy curtains of course!) and called around several places.
We had people come out and give us estimates that we were okay with ($12-$15k) and then one more company came out. The guy brought all the trappings and spent TWO HOURS here. He was super super nice. He went over why his product was the best (and I have no doubt it is) and I knew we couldn't afford it, but he wanted to keep going. He asked how this room would "change our life" and I told him that it would give our child a safe place to play. He got a little weepy when he asked me the whole story and saw pictures of him (Charlie was there, but was in a good period so he didn't look so frightening). He was SO nice. He quoted a price (in the sixty thousand range) and obviously we said we could never afford that. He understood. So he left, with a hug, and wished us luck.
After he left, I wrote the company he was with to praise him for being so wonderful. I said in the email that I had no doubt that they had the best product available, but it was by far out of our price range.
Well, I got an email back from the president of the company which basically said "John explained your situation to me. Don't sign anything with another company until I see what I can do." So, I didn't. He then emailed me again asking how much I could afford, and I told him around $15k at the most. Then he emailed again and asked to come out to the hosue and meet us and look at the site, so I told him to come out. When he came out, he brought the president of a local bank with him. I was totally confused, but went along with it. Before he left he told me that they were going to build the room at NO COST and use it as a training demo.
I was shocked, to say the least. I actually tried to talk him out of it! Really, there are more deserving people out there than we are, and sicker children than Charlie. But he insisted. So....
St. Pete is hard to get permits in, and this was several months ago. Finally all the permits came through, and in the last week people have been out here knocking down our old porch and putting up the foundation for the sunroom. I sent the president of the company an email last week asking how many people would be here on Friday (when they're putting the room up) and what I could do for them. Bring in a caterer, make steaks, etc. I have to do SOMETHING for him!
This is the email I got back last night. I cried reading it. I then read it to our friends who cried on the phone. I can't believe this man.
Hello!
Sorry it’s been so long in the making but the building departments are very creative when coming up with hoops for us to jump through! You’ll probably see as many as twenty people on Friday, but don’t worry about feeding them or anything. We’ll have a caterer feed them lunch and they’ll have water with them. The President of Temo Sunrooms will be in town that day and I know he wants to stop by. R*** C****, Temo’s Director of Field Operations, will be there all day to give our installers the opportunity for continued installation education. The room going up on your home is Temo’s top line product and the installers don’t get the opportunity to install them that often. We are going to install a stand alone A/C in this room so you only need to air condition it when Charlie is using it.
Please get with your father and pick out a fan for the room. We get all our fans at Home Depot, just let me know which one you want and I’ll have one of our people pick it up this week. I have found the Hunter brand to be the most reliable, but Casablanca is also pretty good. Just don’t get the bottom line ones.
I do need to know what kind of flooring we can put down that Charlie will be able to play on. Is he allergic to anything? Is soft carpet good or should it be a laminate of some kind that a throw rug can be put over? We normally leave flooring to the homeowner but I would like this to be complete when we turn over the keys. We have a line of carpeted tiles that can be changed out easily when stained or damaged if you would like to take a look at them. They snap together. Or there are those children’s carpet tiles with designs on them that fit together like a puzzle I think. Let me know and we’ll get it lined up for install right after the room.
We’ll be installing an egress window in Charlie’s room to meet the code requirements. That will be occurring around the same time but might be after the room as the manufacturer is not promising delivery until the 8th.
Also, Pinellas County has added another little caveat to the permitting requirements. We have to make sure your smoke detectors meet current code. That means they are required to be hard wired to your electrical system; so we’ll be doing that also if you are still on the battery operated type.
Your thanks are appreciated, but not necessary. Knowing what great parents you are and what a loving home you provide for Charlie is thanks enough. There are so many children who have neither. And that is sad. At least you’ll have an unusual Christmas present story for the family storybook. Not many can say they got a playroom for Christmas!-)
See you Friday,
K****
How do I ever repay them? I was going to have lunch catered, but they're doing that already. I can't pay them (I offered). I was thinking of a large Harry and David basket to them main office, and a smaller one to the president of the company, but that seems so insignificant. Then I thought about calling the newspaper, because every company wants good publicity, right?
I feel like we don't deserve this. There are people out there who need this way more than we do. I don't know why this company picked our family to do this for, and I am eternally grateful, but feel so unworthy. I want to do something, anything, to show our gratitude, but I am really stumped. Any ideas?
Since our son was born, he has had numerous health problems that his doctors could not figure out. It started with rashes, then got to where his skin was sloughing off his body. We had to keep him arms and legs wrapped at all times, and he had infection after infection, many of them severe. We were told not to take him outside (sunlight) and to bleach the house top to bottom on a regular basis and bathe him with diluted bleach. He had test after test, getting in touch with his half siblings (from the donor) revealed that ALL of them had the exact same problems and no one knew what it was or how to fix it. Charlie was going to a different doctor every day of the week. We saw every almost every dermatologist in the Tampa Bay area and a few in Orlando, he saw several immunologists, hematologists, oncologists... if it ends in -ologist, he's been there.
His health insurance kicked him once he reached the benefit maximum, and we paid all of his bills until Medicaid would pick him up. Before that we were paying $200/week in copays at least. Add this to the extremely expensive formula he had to have (he didn't have solid foods until over a year, because he couldn't handle them, and Jean could only make so much milk) and we were putting out probably two thousand a month for his medical bills (before Medicaid and WIC kicked in in February). Now we still have to pay for some of his medications that aren't covered, pay for most of the formula (runs about $15/day at this point, since he can now eat some solids), and pay for all the incidentals (wrapping, silver dressing, ointments, chiropractor, etc).
This is all relevant to the story, I swear.
Well, before he was born we had planned on adding on to our house. We live in St. Pete, where all the houses are either very small, or the size of shopping malls. No in between. We do not have a shopping mall house. Now, since our savings were gobbled up by his medical bills, and we then took out more money against the house, we didn't have a lot to work with. We decided to skip it, until we were told Charlie needed to be kept inside and away from other kids. At a time, his immune system was just shot, and sun was making him blister and scab over. So we decided to go just for a sunroom (with heavy curtains of course!) and called around several places.
We had people come out and give us estimates that we were okay with ($12-$15k) and then one more company came out. The guy brought all the trappings and spent TWO HOURS here. He was super super nice. He went over why his product was the best (and I have no doubt it is) and I knew we couldn't afford it, but he wanted to keep going. He asked how this room would "change our life" and I told him that it would give our child a safe place to play. He got a little weepy when he asked me the whole story and saw pictures of him (Charlie was there, but was in a good period so he didn't look so frightening). He was SO nice. He quoted a price (in the sixty thousand range) and obviously we said we could never afford that. He understood. So he left, with a hug, and wished us luck.
After he left, I wrote the company he was with to praise him for being so wonderful. I said in the email that I had no doubt that they had the best product available, but it was by far out of our price range.
Well, I got an email back from the president of the company which basically said "John explained your situation to me. Don't sign anything with another company until I see what I can do." So, I didn't. He then emailed me again asking how much I could afford, and I told him around $15k at the most. Then he emailed again and asked to come out to the hosue and meet us and look at the site, so I told him to come out. When he came out, he brought the president of a local bank with him. I was totally confused, but went along with it. Before he left he told me that they were going to build the room at NO COST and use it as a training demo.
I was shocked, to say the least. I actually tried to talk him out of it! Really, there are more deserving people out there than we are, and sicker children than Charlie. But he insisted. So....
St. Pete is hard to get permits in, and this was several months ago. Finally all the permits came through, and in the last week people have been out here knocking down our old porch and putting up the foundation for the sunroom. I sent the president of the company an email last week asking how many people would be here on Friday (when they're putting the room up) and what I could do for them. Bring in a caterer, make steaks, etc. I have to do SOMETHING for him!
This is the email I got back last night. I cried reading it. I then read it to our friends who cried on the phone. I can't believe this man.
Hello!
Sorry it’s been so long in the making but the building departments are very creative when coming up with hoops for us to jump through! You’ll probably see as many as twenty people on Friday, but don’t worry about feeding them or anything. We’ll have a caterer feed them lunch and they’ll have water with them. The President of Temo Sunrooms will be in town that day and I know he wants to stop by. R*** C****, Temo’s Director of Field Operations, will be there all day to give our installers the opportunity for continued installation education. The room going up on your home is Temo’s top line product and the installers don’t get the opportunity to install them that often. We are going to install a stand alone A/C in this room so you only need to air condition it when Charlie is using it.
Please get with your father and pick out a fan for the room. We get all our fans at Home Depot, just let me know which one you want and I’ll have one of our people pick it up this week. I have found the Hunter brand to be the most reliable, but Casablanca is also pretty good. Just don’t get the bottom line ones.
I do need to know what kind of flooring we can put down that Charlie will be able to play on. Is he allergic to anything? Is soft carpet good or should it be a laminate of some kind that a throw rug can be put over? We normally leave flooring to the homeowner but I would like this to be complete when we turn over the keys. We have a line of carpeted tiles that can be changed out easily when stained or damaged if you would like to take a look at them. They snap together. Or there are those children’s carpet tiles with designs on them that fit together like a puzzle I think. Let me know and we’ll get it lined up for install right after the room.
We’ll be installing an egress window in Charlie’s room to meet the code requirements. That will be occurring around the same time but might be after the room as the manufacturer is not promising delivery until the 8th.
Also, Pinellas County has added another little caveat to the permitting requirements. We have to make sure your smoke detectors meet current code. That means they are required to be hard wired to your electrical system; so we’ll be doing that also if you are still on the battery operated type.
Your thanks are appreciated, but not necessary. Knowing what great parents you are and what a loving home you provide for Charlie is thanks enough. There are so many children who have neither. And that is sad. At least you’ll have an unusual Christmas present story for the family storybook. Not many can say they got a playroom for Christmas!-)
See you Friday,
K****
How do I ever repay them? I was going to have lunch catered, but they're doing that already. I can't pay them (I offered). I was thinking of a large Harry and David basket to them main office, and a smaller one to the president of the company, but that seems so insignificant. Then I thought about calling the newspaper, because every company wants good publicity, right?
I feel like we don't deserve this. There are people out there who need this way more than we do. I don't know why this company picked our family to do this for, and I am eternally grateful, but feel so unworthy. I want to do something, anything, to show our gratitude, but I am really stumped. Any ideas?
I believe all things happen for a reason. I'm sorry about the medical problems you and your SO are having with your son.
