Hello evryone, My name is Adrian and I am the father of Desmian I. Santos and his mother is Myrna (she goes by Melissa her middle name). We are asking for as much help as we could get with our current situation.
Desmian as of right now is currently under the care of the University of Chicago due to a cancerous brain tumor that has taken over his entire brain. With that said I will give you a bit of a insight as to why we need help and how Desmian got to where he is now. When Desmian was 6 years old he was diagnosed Guilian-Barre syndrome (muscle disorder). Desmain had to allow the disorder to break down all his muscles in order to start his treatmeant. His treatment lasted a year with him being in the hospital for 3 months out of that year. Desmian had to learn how to walk, write, and feed himself all over again. At this time I was in the military and had much support as did he and our entire family. In that 1 year he went from walking, to bed rest (not being able to use his muscles), to using a walker and wheelchair, and back to walking on his own again. As you could imagine it was a rollercoaster but he survived it like the champ he is. He was diagnosed 09/06 and back to normal by 05/07.
On 12/08 Desmian had a lump on his chin and the doctors thought it was just a cyst so they removed it without checking it out. Well a month later (01/09) the cyst had returned in the same exact location. This time the doctors removed it and sent it in for testing. It came back as a cancerous tumor (Rhabdo Sarcoma). At that point they started him on a regiment or chemo and radiation. The treatments required him to remain in the hospital from Friday afternoon til Sunday evenings for 10 months. Once that was over they checked his blood work 2 months later to make sure there was no signs of cancer cells left in his body. Once they deemed him A OK, they cleared him to move back to the Mid-West as long as he got blood work done every 6 months. He was now in remission.
Desmian was getting his blood work every 6 months as ordered and nothing was unusual. IN 11/14 2 months before he was to go for his 6 month check on his blood work something was wrong with Desmian. He was walking funny, having bad headaches, blurry vision, and trouble talking. He was taken to Community Hospital in Munster Indiana where they did all sorts of test on him and found a dark spot on his brain which turned out to be a cancerous tumor. At that point they had him flown out to the University of Chicago for further evaluation. After being there for 2 weeks the doctors removed the tumor and had it tested which it came back as brain cancer (Glioblastoma). When the doctors sat us down to explain to us the severity of the situation all 3 had their head down. They sat us down and explain to us that our son Desmian at the time 14 years old had less then 5 years to live due to this tumor and that there was no cure for this type of cancer. They explained to us the the mortality rate was at a outstanding 98% within the 1st 3 years. If he was to survive those 1st 3 years he would only have a 1% chance of surviving to his 5 year mark. He has under went 5 surgeries since 11/14 to remove tumors from his brain and every time 1 is removed it comes back faster and bigger. This last time they were not able to do a surgery on the tumor because there was a pocket of blood surrounding the tumor. If they were to cut through the blood pocket Desmian would have died while on the surgery bed. So they gave him meds to control the growth of the tumor (slow it down) and to help with the pain.
Desmian will now remain in the hospital where he is non-responsive until he passes. The tumor has taken over his entire brain and there is no more anyone can do for him. The University of Chicago is taking great care of him at the moment but we know our time is limited with him. He will spend his 16 birthday (5-25-00) in the hospital not knowing whats going on.
We are asking for help to cover funeral expenses and medical bills. We tried to get Desmian life insurance for many years but no one would cover him due to him have 2 rare conditions. They said he was to high risk and the ones that would cover hime wanted upwards of 200 plus dollars a month. If i was able to pay that on my salary I wouldnt need life insurance and would just put that money away into savings. The bills are overwhelming and so is the cost of the funeral expenses. The funeral expenses alone are just over $10,000 and we are still in debt with medical bills that are just over $30,000. We are asking for as much help as we could get. If you can spare a dollar thank you very much if not just sharing this with everyone know is just as helful and thank you very much for that. Thank you for your time and effort on reading up on our son's medical history and having the patience to read this. PLEASE HELP US BY SHARING if you can not donate. From us to you THANKS