Mack's Medical Travel Expenses

Story

We are raising money to help with all the travel expenses for the trips we have taken to Boston, and he also has to be taken to occupational therapy / physical therapy at least 3 - 5 times a week. His conditon is rare, and he is the only one that they have ever seen with it. They are still not sure as how to treat this yet. Basically right now all we can do is expose him to museums and things of that nature, and his therapies that he currently has. That's all we can do is wait and see. Basically he has significant brain damage. The blood vessels in the back of his brain are narrowing, and they continue to get worse year after year. They think this may be genetic because about a month ago his mom had a stroke, or maybe two. Her stroke happened in the same part of the brain as his did. From what I was told strokes do not normally happen there, especially in children. The doctor's have never seen a case like his before, and they have never heard of a case like his before either. They have seen maybe a handful of children with similar symptoms, but not like that in the back of the brain. This makes it much harder for the doctors to come up with a treatment plan. I am hoping that he does not gave another stroke, because the doctor's said it will only continue to get worse. The next one could debilitate him even more that he already is.We are very hopeful that they will be able to figure out how to make the strokes stop happening. Each stroke gets worse and worse. The last one on June 20th was the worst one yet. It basically as made his short term memory non existent. He will also carry this issue for the rest of his life.My son Mack’s story started in May of 2013. His mom dropped him off in school, and then she got a call from the school saying that there was something wrong with him. When she got to school he had the droopy face, no control of his left side, and also his words were garbled. He didn't make sense when he spoke. She took him to Coral Springs Medical Center. The next day they did an MRI, and they found that he had a stroke, and also had a previous stroke that we never knew happened. He was transferred to Miami Children’s Hospital. They proceeded to run a myriad of tests. They found that he had a PFO hole in his heart. He was put on injection blood thinners, and after 5 or 6 days they sent him home. In September of 2013 he had surgery to put a patch in and close the hole in his heart. They thought that this wold stop the strokes. In the latter part of January of 2015, they stopped his single 81mg aspirin that he had been on since the patch was put in. Then the last week in March of 2015, he had another stroke. The night before he had a horrible headache, and the next day he was having the stroke in the morning. The only way his mom figured it out is because, he couldn’t remember anything. He asked his grandmother where his mom was, and then he came back a minute later to ask the same question. She rushed him to the hospital in coral springs, and the scan showed that he was in the middle of the stroke. Miami Children’s hospital sent him in a helicopter. After he got out of the helicopter, he couldn’t remember being in one. That is a pretty big deal for an 8 year old, and to this day he cannot remember it. The doctors still could not figure out why this was happening, and instead of referring us out to Boston, they just said take 1.5 baby aspiring a day and this SHOULD protect him. So everything was working ok for him, however after the first stroke he had to re learn to read and write. He is basically at a beginning 3rd grade level for reading and writing, but he is going into 4th grade this year 2016. He was held back in first grade, because of the first stroke that we knew about. So fast forward to June 20th. He woke up and when he got out of bed he couldn’t control the left side of his body. He started to laugh, which I found out was his defense mechanism, and although I couldn’t carry him, I helped him walk. We went to a satellite office for Miami Children’s, and when we walked in they said there were no doctors there till 10am and it was 944am. I rushed him to Jupiter hospital and we made it there in about 4 minutes. They examined him, and once again Miami Children’s sent a helicopter for us. We got in the helicopter, and when they turned on the engine I noticed something smelled like it was burning. Since I had never been in a helicopter before, I didn’t say anything. About 5 minutes into the flight we started to hover. Then we started to land again at the same hospital. I didn’t know it was the same hospital until we got on the ground. They then called the fire trucks, because smoke was billing into the passenger area. They of course couldn’t fly us, and they sent an ambulance for him. I later found out from one of the pilots in the hospital that it was just oil on the engine block. He was in the hospital for 10 days. They did an angiogram of his brain at Miami Children’s Hospital during his last stay in June there. There was a Rheumatologist who came into his room, and told his mom and I that it was normal. They also then started to ask for help from Boston’s MassGeneral, and also they talked to Toronto Children’s Hospital as well. Toronto told them to put him on Plavix, and keep his aspirin therapy. After all of this, we finally were able to get to Boston, and that’s another long story on it’s own. The Dr. in charge there is Dr. Musolino, and she said that Miami read the angiogram wrong, and if they would’ve read the MRA / MRI from before they would’ve seen that his blood vessels in the back of his brain are narrowing. If you look at the pictures over the last 3 years of his brain, you can actually see some of the blood vessels in the hippocampus area have actually disappeared. He also has significant brain damage to that area of the brain. It has totally affected his memory, and unless he studies something over and over again, he can’t remember it. He used to know his birthday before that first stroke, now even when I mentioned it to him a bunch of time's on Friday the 5th, and just a few minutes later when the doctor’s asked him when his birthday was he looked at me and asked dad when's my birthday. Miami Children’s never told me how serious this was, we had no clue how bad it was.