He was born 2 weeks early because he and his mother Alberta were having heart issues. Either hers would be beating too fast and his would be too slow, or his would be too fast and hers would be too slow. The day he was born, his mother fell in love. He seemed perfect in every way. The only abnormality that he had was a slight heart murmur. Ten days after he was born while on a trip away to visit f
amily, Justin stopped breathing and turned blue. When the family returned home his mother took him to the hospital to find out what was wrong. At that time he was diagnosed with Sleep Apnea and sent home on a monitor. As time went on things did not seem to get any better. So his mother took him in for more tests. It was determined that Justin did not actually have Sleep Apnea, he had Epilepsy this is a seizure disorder. Because of his age the types of seizures that Justin was having were not known. This tiny infant was placed on a powerful seizure medication called Phenobarbital, this drug turned Justin who was a happy, smiling and growing and advancing normal infant into a zombie. He stopped smiling, stopped progressing, trying to crawl or anything else that you would expect. Justin spent the first year and a half of his life in the hospital, so much time that his mother had problems working, as well as the fact that people wondered why she was paying rent since she was always at the hospital. His mother was being told that if he lived, he would never walk or talk or be able to do anything, he would basically be a vegetable. This was unacceptable for his mother Alberta. She searched for other answers and other doctors. Alberta searched, she finally found a wonderful Neurologist, who immediately took Justin off the Phenobarbital and placed him on some other medications. He said a child should have never been placed on Phenobarbital. Well the change was almost immediate Justin started crawling, babbling and soon talking. At this time Justin needed to start wearing a helmet, because when he was having seizures he could not tell us what the problem was and he would bang his head against the floor or the wall. But now that Justin was walking and talking he started complaining of chest pain, so back to the doctors Alberta went. Tests were run and Alberta was informed that the left side of Justin’s heart was longer but narrower than it should be. This was causing a problem with blood flow. To this day he has to be careful about getting over exerted. But they are keeping watch on this. Justin continued on but his seizures were getting bad again, every time he got sick he would have seizures we started noticing that when he had a fever he would have noticeable ones. That is when we got told that he had Ferbrile seizures. More hospital stays, more doctors visits. It was finally determined through testing that Justin was having more than 700 seizures a day. He was diagnosed with Grand Mal which are the episodes of major shaking, eyes rolling in the head falling down, Petite Mal which are similar but do not involve major shaking only minor and Absence seizures these seizures look like day dreaming, but his tongue will sometimes be at the side of his mouth and when you get his attention he is unsure of what is going on. More medications where given. At this time the Neurologist ran a bunch of tests and determined that Justin had scar tissue on the inner left hemisphere of his brain, which controls speech as well as on the left Hippocample lobe of the brain. This section of the brain controls long-term memory and spatial relationship. It also controls behavior and attention. So you can imagine for a little kid how much of a problem this can be. On top of all this for no apparent reason Justin started projectile vomiting. Test were run and it was determined that Justin had Gastrointestinal Reflux or GERD. His mother started having to watch what he ate. At this point you need to know that Justin was getting older he started going to school, he was turning into the most loving, kind, wonderful little boy you would ever meet. He worried about everyone and everything, except what was going on with him. The only thing that bothered him was kids making fun of him or worrying for his mother. Especially since at this time the Neurologist had explained to Alberta that Justin would one day need brain surgery not to cure him but to help slow down the number of seizures that Justin was having per day. Otherwise his seizure would end his life early. The Neurologist has explained that there are milestones that Justin needs to reach for us to know that he may be ok. If he makes it to 12, 15, then 18, if he makes it to 18 he should be able to live a somewhat normal life. He also explained that for safety sake the surgery really needs to wait until Justin is at least 12. You need to know that if Justin has the surgery before he is 12, his chances are about 50-50 and of the 50 percent of living he has a 50 percent chance of being mentally challenged. If he can wait the chances go up to 70-30 then of the 70 percent chance of living he has a 30 percent of being mentally challenged. So the older he gets the better it is. About 3 years ago Justin started complaining of throat problems, his mother again went back to the doctors. She was informed that Justin had what is known as Esophillia esophagitis. This is a problem with the Esophagus that can lead to Esophagus cancer. They looked to see what was causing the most problems and determined that Justin had many allergies. These include wheat, soy, corn, peas, nuts and dairy. So you can now imagine how hard it is for this young man to be able to eat. Two years ago, Justin got really sick again. This time when he went to the hospital he was diagnosed with Pancreatitis. This is a disease of the pancreas that causes it to be inflamed. It gives him great pain and means it is dangerous for him to be hit in the stomach. Two weeks ago Justin had a seizure, where he did not know who he was, who is mother, father, family friend, and best friend, brother, or myself were. He lost his speech, this all lasted for two hours and he also forgot how to do a few other basic things. During, all of this Justin’s mother Alberta, has been going to school and working. She graduated from Kaplan University with a Medical Assistant Degree. She has been working unfortunately she has lost at least 2 jobs because of Justin’s hospital stays. At one of her jobs a patient threw, her into a wall and she has a couple of slipped and herniated disks in her back. She has also been struggling with an injury since high school that caused her to have Reflex Sympathetic Dystrophy basically this is never damage that is going up her one arm and down her back. She is currently working and going to school. Her current job has been giving her a hard time about missed work. She is attending online school to get her Bachelor’s Degree in Medical Management. Now that you have the medical background on Justin, I would like to take a moment and give you some personal background on him. Justin is a 9 year old loving little boy. He likes to play, run, wrestle and all the things that little boys love. But as you now know, he cannot run, he cannot risk getting hit in the head nor can he risk getting hit in the stomach. Justin loves fast food, pizza and all the things that go along with being a kid. But Justin has to watch, he cannot have most of the foods that a little kid would love to have. The family has to be ever vigilant about reading labels. Justin loves pop, but we have to make sure that there is no corn syrup in the pop. Usually that means that we need to make sure he gets Coke from a 2 liter bottle. How do you enjoy life as a kid like this? Justin would love to play basketball, but we all know this is not possible. So now that you know the history of Justin, we are asking for prayers and any help that you may be able to give. With his mother cutting back on work to help deal with Justin, the household finances are a real problem. Being able to buy dry goods, cleaning supplies and the like, as well as when Justin is in the hospital his mother needs to be able to eat and if she has no money this is impossible. As of right now 6/30/2012 it has been confirmed Justin will need surgery very soon. We have been told to consult a neurosurgeon. So we will need as much financial help as possible to be able to get there for appointments and such. Current Update which actually occurred within the last 6 months on Justin, he was placed on what appears to be the last med. They can put him on before surgery. called Onfi, unfortunately, they miss calculated the dose and he ended up in the hospital with an overdose. During that time Justin's uncle and God father passed away. Justin is still not taking that well, he is also not really being well maintained with the Onfi. So 6 months from 09/04/2013 the doctors will very seriously be talking brain surgery. 2/21/2013 Justin just got out of the hospital, he had a concussion from falling out of bed while having a seizure. They did catch a seizure on the video eeg. This will most likely mean that they will try for surgery earlier. Although his mother does not like that idea.
12/9/2014 BIG UPDATE, Justin saw the neurologist today, his surgery will be taking place within the next 8 months. They will be doing two things during the surgery. The first is that they will be removing the left hippocampal lobe of his brain. The second is they are going to try and block the edges of any other scar tissue to prevent it from spreading. One of the biggest obstacles that the family needs to overcome is getting together the $ 1500 for the insurance to cover the rest. I will be looking into funding options to help this family with the cost as well as extra money for the time of the surgery when Mom will not be able to wo
