Hi TJ Yes we do seem to have some similarities. My son was 13 and very healthy.......or so we thought.(and no I don't mind talking about it). In 2001 Danny played hockey one Friday night and then he had a friend sleepover (a very common practice in this household). ANyway they were gettung set to watch a movie in his room when he came into our room (I had just gotten out of the hospital myself after foot surgery and a mysterious illness...but thats another story. He was as white as a ghost and complaining of severe pain in his side/back. My "mother" instinct kicked in and said this boy needs to go to hospital so my husband& I rushed him to Childrens. They did xrays, bloodwork and finally about 6 or 7 in the A.M. they did a CT. He was on a morphine drip by now so he was pretty out of it. The surgeon came in & told us he had some "old blood" the size of an orange and the thought was that he had a ruptured adrenal gland...which of course at the time we couldn't figure out why!! ANyway he was in hospital a week and on complete bed rest. Further CT's (3 I think) in the space of a few months showed first that there was a cyst near the spine area and second that it had shrunk from 3cm to 8mm. The doc said surgery not required and he could resume all activiites. He was perfectly fine after that and skateboarded his heart out. Then the following winter played hockey again (full contact). Then this past May we had a hockey team party at our house (parents) and Danny & his friend once again had a sleepover. They of course ate junk food galore and prior to the party they had been helping tear down a treehouse using a sledgehammer (very physical) In fact I had told them to cool it and stop cuz they had been at it for awhile. The next day he told me he had thrown up a little in the morning which we both thought was due to junk food from the night before. He felt OK after that then he & his brother & Dad went to the driving range to hit a bucket of balls and the next thing I know my  husband is calling me to tell me Danny is suffering severe chest pain and we need to get to the hospital. They pick me up and we get there they do heart tracings, chest xray. blood work, EKG and a urine test. His pain subsides after awhile and all tests are normal, except the urine test had a little blood in it and the ER doc said to redo it later that week. He was fine the rest of that week. We dropped off the urine sample and the doc calls on the Friday to ssay he wants to see him.An appointment was made on the MOnday. That Friday night we are all at his brother s concert when we notice that Danny looks a little tired and his face is flushed, and he starts to complain that his jaw had "growing pains" The concert was over in 10 min and we were only 10 min away from home. AS we were leaving he seemed like his normal self goofing around & stuff. We got home and were getting ready to try our new hot tub when my older son heard Danny moaning & complaing I go in his room (before I continue I forgot to mention that he had liquid Advil when we arrived home) He tells me that the Advil has given him a severe headache and I got him to sit with me on the bed. Then with my arm around him he just collapses and he's gone, just like that. We did call 911 and they did work on him & transport him to hospital but I knew he was gone already. Afterwards we did question the results of the 2nd urine test and were told there was considerable amount of blood.......Should have been a red flag maybe!!!!!! The cause of death was a ruptured aorta in his heart. The autopsy did show a bleed near the adrenal gland.......sound familiar!!!(2 years ago). The Dr's actually came over to our house and went through the autopsy report to a certain extent (I could only hear so much) Do we have questions ...you bet we do . They still haven't been answered to my satisfaction. I want to know maybe why an echo wasn't done on him the week before. When a kid comes in complaining of a sore jaw & chest pain.....another red flag. I also want to know of any connection of the internal bleed to VEDS. Is it to much to ask.?? These doctors (some of them) are so concerned about covering their asses they forget that we are people and we have suffered a devastating loss. all I want is an explanation. Anyway I have talked enough, now its your turn and I'm sorry if this is too much for you. We miss Danny so much and sometimes I just don't know how to carry on especially now since my diagnosis but I have to admit being on this medication has really really helped. Well I'll sign off now and take care. Hugs Betty

Hi TJ
I would do anything to help you out, except I can't be where you are.
I would certainly be willing to write a letter/email, however I myself do
not have any pain issues. Right at the moment VEDS is not affecting me
phsyically. It has kicked the crap out of me emotionally and my life will
never be the same again due to Danny's death and also because I think
everday if this is going to be my last. Just let me know what I can do.
Betty