seizures – Page 5 – thetruesuperman

The Real Superman Part XIII

By Jeff King

December 22nd, 2011 was finally here. We took Dylan to his surgery appointment early that morning at Johns Hopkins Children’s Center. We had to be there by 6:00 AM to get him prepared for the VNS. My wife and I was quite nervous about this procedure. We had researched it and we knew that he was at the top hospital in the world. With the top neurological surgeon for children, George Jallo. Who is also the Clinical Director of Pediatric Neurosurgery and a Professor of Neurosurgery. This guy is the best in this field and he has the credentials to prove it. We were still very worried. We prayed and waited with Dylan until the anesthesiologist showed up. He had his own team that he brought with him. They assured us that Dylan was in good hands. Of course we were concerned after what Terri had went through, but this was the hospital that I had taken her to. This was where the surgeon who had put her back together once practiced at. He had moved on to another hospital, but he had designed the surgery that saved my wife’s life Dr. Charles Yeo was a miracle worker and we were sure that Dr. Jallo was cut from the same cloth. He worked at the same hospital. The hospital that people from all over the world come to when they want to get well! Dylan was in good hands indeed.

The surgery took about three hours and the Doctors assistant kept us informed throughout the surgery. This is definitely a first class hospital and they deserve every award they receive.

After about three hours the Doctor came out and told us himself that everything went well and that they were getting ready to transfer Dylan into recovery. It took about a half an hour before a nurse came out and got us and took us to Dylan. He was out like a light and we examined is tiny body. He had a scar that ran up the left side of his chest to just under his chin. It looked like someone had cut his throat. It was a little disturbing looking to us. Dylan was out for about an hour before he finally woke from his drug induced slumber. We thought he would wake up crying or screaming, but, no, he didn’t. Like some sort of Friday the 13th movie Dylan sat up like Jason Voorhees. He was ready to get up and go. We gave him some juice and he drank it down like it was nothing.

Almost immediately we noticed a difference in Dylan. The first few weeks we almost had the old Dylan back. He was more alert and for the first time in over a year he was seizure free! Our thoughts were, “finally, we have found the magic bullet. This would surely be the golden cure that we were looking for. We took him to Dr. Rubenstein over the next several weeks so that he could adjust the stimulator. He was amazed how well the surgery went and how well Dylan was doing. He witnessed Dylan trying to communicate again. He wasn’t talking yet, but he was definitely more vocal and we truly believed that soon, he would talk once again. Finally our son had returned. How I missed that boy.

Dylan was more animated than he had been in over a year. He was walking around and moving at will. He began to play with some of the toys that had been lying dormant for the past year. We were definitely witnessing our second miracle; the first one being the day he started running. What we didn’t know that this too was only a temporary fix and that the seizures would be back with a fiery vengeance in about 4 months. (To be continued.)

The Real Superman Part XII

By Jeff King

We began hearing a term called VNS. This procedure was supposed to be working miracles for people who suffered from intractable epilepsy. I didn’t even know what VNS was, let alone how it was done, so I began to research it. I went to the Epilepsy website and began to read about this new and innovative procedure that was helping tens of thousands of people who suffered from epilepsy. They termed this new procedure as, “the pacemaker for the brain” (Schachter, 2013). This device is placed under the skin on the left side of the chest. The wire runs to the Vagus nerve which is a part of the autonomic nervous system. This nerve controls functions of the body which are not under voluntary control. The neurologist sets the devices impulse to send a small jolt of electricity to the Vagus nerve. In theory this can stop a seizure from happening. You are also given a magnet that you can use for any onset signs of seizures, or when a seizure comes on. You placed the magnet over the stimulator outside the chest and in theory, it stops the seizure. You can learn more about it at http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/devices/vagus-nerve-stimulation-vns. This sounded wonderful, a very promising weapon against seizures. The more I read about it as well as testimonies from patients and parents and family members of patients the more I liked it. My wife had also checked it out and we were determined to talk to Dr. Rubenstein about it.

On Dylan’s next appointment to see him he asked us how everything had been going for Dylan, we explained how Dylan just laid around very lethargic and was continuing to have up to 40 seizures a day even on the medicine. We asked him to help us order a special wheelchair for Dylan, because, I could no longer carry him around because, he was getting so heavy, plus he was dead weight. He agreed and put a request into Medicaid. He started talking about maybe introducing a new medication into the mix. Terri and I quickly cut him off and almost in unison said that we wanted to try the VNS on Dylan. He listened patiently and then said, “I couldn’t agree more.” I am glad that you both are very pro-active in Dylan’s health and you both are well informed. I definitely believe that he is an excellent candidate for this procedure.” We talked a little more about it and he gave us all the details about what to expect and what side effects could also occur with this procedure. We all came to the agreement that Dylan would be fitted with the VNS and we began to plan the date of his procedure. His surgery was set for December 22nd, 2011. Which was about three months away.

Medicaid had approved him for his wheelchair, which was great for us, because now we were able to go to the store and take Dylan in with us. Before that I would sit in the car with him while Terri went inside to do the grocery shopping, which was okay, but I believe it was better if Dylan was able to go into the stores too. I mean his life consisted entirely of laying around having seizures. He no longer watched any TV. He was just there. It sounds cold and harsh, but that’s the best way I can describe him. I can tell you as a father, I cried many tears as I watched him slowly disappear his whole personality was vanquished. It was a very sad and horrible existence that he was living. I thought about the Metallica song “One” “Darkness imprisoning me All that I see Absolute horror I cannot live I cannot die Trapped in myself Body my holding cell” (James Hetfield Lars Ulrich, 1993).

I thought how sad, his body was his holding cell! This made me weep hot tears of sorrow ran down my face! I was sure hoping that the VNS would deliver my son from that darkened abyss that he disappeared into.

When we got his wheelchair we decided to go shopping at our local grocery store. I got the chair out of the trunk and set it up. I got him out of the back seat and placed him in his chair. We went grocery shopping. He just sat there impassively, but at least he was out and about, so that was a good thing. We finished shopping and we go outside. I was pushing Dylan and Terri was pushing the shopping cart. There was a car blocking the handicap aisle that was in front of the store. Terri yelled out, “How rude!” The driver of the vehicle pulled up out of the way, but started cussing us out. I told the lady that she didn’t want to mess with my wife and that she was illegally parked there anyway. She got out of her car, but stood inside her car door and hurled insults at us. Then she says to me, “You’re not even a real man, because you couldn’t even create a whole child!” Man I was enraged, but Terri was twice as angry. She wanted to go after this vulgar extremely evil women, but she didn’t. She just walked away! What an offensive wicked thing she had said! I am not going to lie, I cursed her and said that one day, that she would reap what she had sown. She reaped hate she will definitely sow that same hate! This was just another of the many incidents we would have along this journey. The hate and the evil that spews from the mouth of people against people with special needs, children with special needs! I never hated anyone in my entire life, but as God is my witness, if that woman would have choked to death on her hateful words, I would have begun to cheer right then and there. Don’t get me wrong, I really don’t wish those type of things on anyone, but it was very hurtful. It just made me hurt for my son and I just couldn’t believe this woman would say such an ugly thing about a child. (To be continued.)

The Real Superman Part X

By Jeff King

Over the next several month’s Dylan continued to have seizures he had Grand Mal, Absence, Myoclonic, Clonic, Tonic, atonic. You name it, he had it. The seizure activity was so frequent, my wife and I often wondered how long can Dylan survive like this. These dark, demonic beast had taken control over my son’s body and mind. Between the Clonazepam, and the seizures, this little boy was absolutely fried. I remember crying leave him the hell alone! After he would shake and violently convulse. I felt like Father Damien Karras in the Exorcists when Regan was convulsing and being distorted by the demon that had possessed her! I to screamed out “Take me! Come into me!” Leave him the hell alone! He doesn’t deserve this! He hasn’t done one thing to deserve this! He is an innocent child! This demon was slowly consuming my baby and I felt powerless. I couldn’t do a damn thing to help him. What a dark feeling. I felt like the Devil himself had come to dwell in our household. This sinister being that held my son hostage had made me realize that this was indeed a dire situation. I started remembering the scriptures “Jesus I know, and Paul I know; but who are you?” Acts 19:15 I felt just like one of the Seven Sons of Sceva, because this beast didn’t know me, but it sure was very acquainted with my son and this demon wasn’t going anywhere. I remember the words that Jesus had spoken in Matthew 17:21 “However, this kind goes not out but by prayer and fasting.” I had prayed, I had fasted I had done everything that I could possibly think of doing, but this one wasn’t going a damn place. It sure wasn’t going back to the hell that it came from, but it did bring hell with it and it was unleashing every dark power it could unto my son and all we could do is watch helplessly! “My God, My God, why have you forsaken me?” I cried those very words. It stung my heart. The feeling of helplessness and hopelessness had taken control of me and my wife. We weren’t just walking through the valley of the shadow of death we were neck deep in the mire of it!

We went back to the neurologist who now prescribed another medication that was supposed to be great for seizures. It was called Keppra and it isn’t a good drug either. Some of the side effects are horrible and Dylan was becoming more and more non-verbal so he didn’t have a voice to tell us how he was feeling, or what this poison was doing to him. Just some of the side effects were: Hallucinations, unusual thoughts or behavior, suicidal thoughts, bruising, severe tingling, numbness, pain, muscle weakness; feeling very weak or tired, fever, chills, body aches, flu symptoms, sores in your mouth and throat, problems with walking or movement

Imagine your child taking a medication approved by the FDA that can cause hallucinations or suicidal thoughts and your child cannot tell you how he’s feeling? Over the first several weeks on this poison Dylan began to bruise more easily every time we turned around Dylan had a new bruise on another part of his body. This certainly wasn’t the worst of it though. Dylan became weak and very lethargic. He would simply lay on the couch and didn’t do anything. He didn’t even enjoy watching any of his cartoons anymore. The little boy who was once so happy and lively had become a shell of his former self. I cried often. As a man society seems to believe that if you cry then it is a sign of weakness. I didn’t give a damn about what society thought about me. My son who once was filled with such joy and love was now this empty being that was now impassive and cold. His beautiful voice was now gone and would never return. The singing had stopped, the laughter had stopped the joy ceased to exist. We were left with memories of a different Dylan. A Dylan that used to run and play and joke and sing and talk and laugh. These demons had robbed his very soul. Between the poisons we were pumping into his body and the seizures which still had control over him, my little boy was gone! Terri and I went through the 5 phases of grief all over again; only this time it seemed much worse.

This had an effect on the entire family. The kids stopped playing with Dylan, because, he wasn’t interested in playing or really doing anything. He would just lay around. At school he regressed and no longer did anything that he used to. The teachers let him sleep most of the time, because the seizure activity was so bad that he would seize sometimes up to fifty times a day and that was with the two medications that he was on. We now had gotten him a wheel chair, because he could no longer walk. Just a few short years ago, Dylan ran in the Special Olympics. This child couldn’t even crawl, let alone walk!

This was indeed one of the darkest times in our lives. The journey we were on had driven us across an arid desolate wilderness. There were no oasis in site and we were getting ready to climb the highest mountain facing the toughest terrain that we would have to encounter yet. If there were a light at the end of this tunnel we had not spotted it yet. We were left forsaken and alone, but we had to continue to trudge on.

The Real Superman Part VIIII

By Jeff King

We made an appointment to see a Neurologist at Sinai hospital in Baltimore city. The Neurologist was supposedly one of the best around. We met him and he had all of Dylan’s hospital records from the previous seven years. Our first impression was a good one of this gentleman. He seemed very knowledgeable and genuinely caring. He played with Dylan and made us feel at ease. He talked about a treatment program that we should start and the first medicine he prescribed for Dylan was a seizure medication known as Lamictal. Lamictal would have the least effect on Dylan’s cognitive skills, so the neurologist explained. We began to give him this new medicine and right away, the seizures stopped. He was doing so well on this medication. We felt like the seizure activity that he had been experiencing was just a little hic up in his overall health, but now with this new medication, he would be back on track.

He continued to make progress and the seizures hadn’t effected his cognitive skills as of yet. He was loving on a new show Yo Gabba Gabba and his favorite character on this program was a little fuzzy monster-like dude named Broobie. Dylan quickly learned the songs on this show and began to sing them. His favorite was called “Party in my Tummy” I still remember Dylan saying, “Does the green beans want to go to the party in my tummy?” He would wait several seconds before answering that question, “Yeah” then he’d break into the song, “There’s a party in my tummy, so yummy, so ,yummy, there’s a party in my tummy!” You get the gist of it.

We weren’t really concerned about Dylan’s cognitive skills. He continued to learn how to say words and use sentences. We understood that most of his language was mimicking what he heard, but, he did know and understand so much. Maybe we should have been more concerned, but at the time there was no indication that he would regress and become nonverbal.

After about two weeks of taking the Lamictal Terri noticed a slight rash around his mouth. We weren’t sure what it was so she called the neurologist to voice our concerns. He asked us to watch him overnight and see if the rash got worse. He never told us to stop giving Dylan the Lamictal. The next day the rash had spread all over his body and he was covered in big blotches. His skin looked as if he had an extreme sunburn. We called the neurologist and he told us to bring him into his office right away. We took him into his office and he said, “I was hoping that this wasn’t going to happen? He’s having an allergic reaction to the medication. He then prescribed some antibiotics to begin giving to Dylan right away. He told us to discontinue the Lamictal. We took him home and gave him the antibiotic. It was about a week before he was better. The neurologist then prescribed Clonazepam tablets to begin giving him. These things would begin to have Dylan spacing out. He slowly began his dark decent into an abysmal place where we weren’t sure if we could ever get him back from.

We had gone through some very tough times before Dylan began to have these seizures. I have already mentioned how Terri went into the hospital to have surgery to remove her gallbladder. It was supposed to be a very quick and easy procedure; a same day procedure. It would be done with the doctor using endoscopic surgery. This minimally invasive surgery was supposed to be an easier and safer way for Terri to have her gallbladder removed, however, the surgeon ended up cutting a bile duct and bile from her liver began draining into her stomach. She nearly died and she had to be transferred to John Hopkins Hospital where a well renowned surgeon who had invented the surgery to fix her practiced at. He saved her life. I touched on this just a little, because about three years after Dylan was born, Terri developed a pretty big hernia, most likely from carrying around Dylan. She had to schedule another surgery with the doctor who had created a new bile duct using part of her large intestine to do it. He would perform the hernia operation, because, we didn’t trust any other hospital or doctor around. She had complications and ended up in the hospital for two weeks. She was so upset, because she kept thinking Dylan would forget who she was. He slept with me on the couch for those two weeks, which was a binding experience for the both of us.

When Terri was released from the hospital, I tried to take some time off the job I had been working for the last ten months, but, because I hadn’t been there for the entire year, I was told by their HR department that I could not do it. I had no choice to resign to take care of Terri and the children. It was a tough dark time in our lives. I can’t mention the name of the company I was working for at the time, because they may sue me if I was to, but let’s just say that they were an up and coming Baltimore Clothing company that has ties to the NFL and whose clothes can now be seen in movies, and even other sports franchises. They were not very family friendly and it is sad that the owner got rich off the backs of his workers and didn’t care if those workers had families or more important things to attend to. I could say Karma is well you know. I know I am being so cliché. Anyway, it is my sincerest hope that the owner will one day reap what he has sown!

I mention these things only because it sets the events in the story of what troubles we would have to face next. We as a family had continuously walked through the shadows, but each and every time we came out holding tight to the light of a promise. A promise of a new and brighter day. Little did we know that this struggle was just getting started. (To be continued.)

The Real Superman Part VIII

By Jeff King

The Real Superman Part VIII

Throughout the years, Dylan continued to struggle. He could walk and run. He could talk, but as I mentioned before his language was rote and he would just use words that he had heard. I believe that he did know some of them though.

Dylan ran in the Special Olympics when he was six years old. We bought him a bike for Christmas and he would get on it out in the front of our house and using his feet he could ride it around. It had training wheels on it, and he never actually learned to ride it, but, that didn’t matter to him; he loved it and had fun just sitting on it and using his feet to move it.

Dylan used to go with my wife up to my older children’s elementary school every morning. There was this little girl, who absolutely adored Dylan and she would go out of her way every morning to seek him out, so that she could give him a kiss on the cheek. My wife said Dylan began to look forward to the little girl coming over to him to give him a kiss. Terri said that he would smile. That blew out my argument that Dylan would not have a first kiss, because, he had many.

Dylan also liked to get in the front seat of our minivan and sit up at the steering wheel. He would laugh and say, “I’m driving, I’m driving.” He would turn the steering wheel back and forth, and he also would turn on the turn signals. These are days that I miss so much. Dylan was incredibly smart. He would come up to us and say, “Want to sing?” Whenever it would rain, if we were walking to the minivan he would always inform us, “It’s raining, it’s rrraining!” One winter we had a big snow storm. It was Dylan’s first real snow and we were at my brother in laws house. I had Dylan outside playing in the snow, he cracked me up when he suddenly said, “Look at all this damn snow! It’s cool!” He did pick up some inappropriate language and at one of his IEP meetings his teacher informed us that he had dropped the F Bomb, but she added, he used it in an appropriate way. We struggled hard to get him to stop saying those words. Many of those words he had learned from his older siblings and probably neighborhood children too. This may sound pretty asinine, but, I would actually love to hear him drop the F Bomb again. At least then, I could hear his voice once more.

As I mentioned before, he could be quite a clown. He would do things to make us all laugh at him. This may actually sound inappropriate, but this was one other thing that would make us all laugh at Dylan. As I mentioned before, Dylan loved Dora the Explorer. He loved the character the map. If you’re not familiar with the map from Dora, it was wrapped up like a scroll and it would sing, “There’s a place you need to go. I can get you there you know, cause, I’m the Map, I’m the Map, I’m the Map I’m the Map.” Well Dylan would actually pull his penis out and sing this little tune. We assume that Dylan thought that his penis was the map, and he would start singing this tune whenever he pulled it out. We struggled to get him to stop, and we’re still struggling with that problem today. He doesn’t sing the song anymore though.

He also knew how to get our sympathy. One day I had him out front and he was running up and down the sidewalk, when suddenly he tripped and fell. He injured his right arm. We took him to a clinic where they examined him and told us that he probably bruised his arm. They wrapped it and told us to put ice on it and give him Tylenol for pain. We did this for about two weeks, because he continued to favor his arm. He would scream whenever one of us tried to lift it up over his head. He whimpered and acted like a wounded animal. We felt bad for him and took him to his pediatrician who re-examined it and said he didn’t see anything wrong with it. He set us up an appointment at a specialist. It took us about two weeks for his appointment and we continued to keep his arm wrapped in the meantime, but whenever one of us tried to lift up that arm, he would continue his little act. Finally the day of his appointment. The bone specialist looked at the x-rays that we already had and took some of his own. He examined Dylan’s arm and about thirty minutes later he called us back in the examining room to go over the x-rays and what his findings were. “I don’t see any nerve damage, any broken bones, or anything at all wrong with his arm.” He explained to us. Dylan had been playing us the whole time. Right after that appointment, Dylan’s arm seemed to be miraculously healed. This little boy was quite an actor. We never had any more trouble with him or his arm afterwards.

Dylan was never potty-trained. We tried forever to get him to go on the toilet, but he just wouldn’t do it. They started to try to teach him at school also. We bought him pull-ups and would take him every half an hour, but, he just wouldn’t do it. We did this for about a year and finally we were having some success. He would come up to us and back his backside up to us and say “Let me check.” He did this because we would always say let me check when we wanted to check his diaper. He would tell the teachers at school, “Pew you stink, whenever he soiled his diaper.” They would tell him, “No, Dylan you stink,” and laugh about it.

We began to be able get him to go on the toilet once in a while. We were happy, because this was a start and we believed that we would finally be successful. Dylan was almost seven years old. He still drank out of a baby bottle and still wore diapers. It was getting expensive. We finally were able to get Medicaid to cover his diapers, but here we were on the verge of a great big breakthrough. We were convinced that he would be potty trained soon, and we wouldn’t need diapers or pull ups any longer. It had been a long journey, but, there was a light at the end of the tunnel.

Then on April 18th 2010, on my wife’s birthday. It was a Sunday. I told Terri that she could sleep in and that I would take care of Dylan. Dylan and I were watching one of his other favorite programs Diego. He was very excited because two of the characters on the program; two monkeys known as the Bo Bo brothers were on there and they were causing some havoc. Dylan was yelling, “Stop Bo Bo’s” which is what Diego and his pet jaguar was saying. The phone began to ring and I got up to answer it. Dylan was standing in front of the TV enjoying his cartoon. It was my mom. We started talking. I decided to go back in the living room to sit down. That’s when I found him. Dylan was face down on the floor moaning he was in the middle of a full blown grand mal seizure! It seemed as if all the blood drained from my body! I screamed, “OH MY GOD!!!!” I heard my mom yelling on the phone, “What’s wrong?” I threw the phone across the room and begin to yell for my wife! “TERRI WAKE UP DYLAN IS HAVING A SEIZURE!” He seized for what seemed an eternity. Terri came running down the stairs. “OH GOD CALL 911!” I ran and picked up the phone from across the floor my mom was still on there I quickly told her what was going on and she began to cry and hung up. I immediately called 911 and told them that my son was having a seizure! “PLEASE HURRY!” I shouted. The 911 operator was asking me a slew of questions that I sure as hell wasn’t worrying about answering right now. I wanted to just scoop Dylan up off the floor and hold him in my arms. The seizure had finally subsided and we awaited the paramedics……. (To be continued.)

The Real Superman Parts I and II

The Real Superman Part I

By Jeffrey King

Why do we consider Dylan the real Superman you may ask? Well if you knew Dylan and children like Dylan, you would see that they really are super! Do they have the power to fly, or bend steel, or are they faster than a speeding bullet? No, but the everyday struggles that these precious children have to endure is nothing less than super. Many people look up to athletes, police officers, fire fighters, soldiers, etc. as heroes, and they definitely are; however, my biggest hero is Dylan and let me explain to you why. In 2003 my wife was pregnant with our third child; which was Dylan. This was a child that we were uncertain that she would be able to have, because in 2001 my wife nearly lost her life due to a medical surgery that went wrong. The doctor ended up cutting a bile duct while he was removing her gallbladder. She was hospitalized for over a month and I was left to care for my two small children who were 2 and 3 years old at the time. I lost my job, due to having to miss so much time caring for them. I won’t get into too much detail about that dark time in our lives.

Time warp to 2003. We found out that my wife was expecting, we were actually shocked, because the doctors said that they didn’t think she would ever be able to have another child. She had a very uneventful pregnancy with no complications. All of her pre-natal check-ups were fine and she did exactly whatever her gynecologist told her to do.

Dylan was born on March 25th 2003 at 5:49 AM. He weighed 8 pounds 9 ounces. He seemed healthy and my wife was fine. No complications. The next morning, he was a little jaundiced, therefore they put him under an ultra violet light overnight. We were discharged the next day, but were told to bring him back to check him out in 3 days, because of the jaundice. We took him back and were given a clean bill of health.

Almost right away we noticed that Dylan was different than our other two children. He had a difficult time sucking his bottle, he couldn’t seem to focus his eyes on anything. He wouldn’t follow my wife’s voice. He was very stiff and floppy. At three months old he couldn’t hold his head up, didn’t smile and couldn’t grasp objects. This was difficult on my wife, because, she felt that something was wrong, but family members just said that she held the baby too much and didn’t let him develop on his own.

We were very concerned that Dylan wasn’t meeting any of his milestones, so we took him to his pediatrician to voice our concerns. He was a little over three months old. She examined him and told us that he just may be developing slower than normal and told us to give him another few months and bring him back if there were no changes. She saw him again when he was six months old and he still was having a developmental delay. She then made us an appointment with a geneticist. It took us several months to get in to see the geneticist and he examined Dylan and did some blood work on him.

Several weeks later we received a call from Dylan’s pediatrician who told us that we needed to go and see the geneticist right away; he had the results of Dylan’s blood test. We called to make the follow up appointment with him and he saw us right away. He brought us into his office and he explained what was going on with Dylan, who was now nine months old. I will never forget the conversation. He told us that what Dylan had, he had never seen anything like it since he became a doctor. He went on to explain that Dylan had a triplication of one of his chromosomes, chromosome 15. He explained that this chromosome had made two copies of itself; the original, the second copy, which was inverted and a third copy of itself. He went on to explain that this was what was causing Dylan’s developmental delay and that there wasn’t anything that he could do to fix it. He told us that Dylan would probably need extensive services to try to get him to develop. He would need physical and occupational therapists as well as a speech therapist. We asked what should we expect and his reply was exactly this, “You can’t put Dylan in a box, I am not sure what he’ll be able or unable to do, but it is better to start these services early to benefit him as much as possible.” He also went on to tell us, “Since I have never seen this condition, I really don’t know what you can expect and if I were you two, I would go do your own research to see if you can find any other children with this rare condition.”

Terri and I were devastated! We felt like we did something to cause our boy to be like this. We saw a child in a wheelchair who was severely crippled and was twisted up like a pretzel. Excuse my description, but that is the only way I could describe him. Terri looked at him and began to bawl uncontrollably. I grabbed her and pulled her to me. I told her, that we didn’t know if Dylan would end up like this, but even if he did, we will be the best parents that he could ever have…… (Continued Later.)

The Real Superman Part II

We went home and together sat at our computer, we googled triplication of chromosome 15 at that time there wasn’t anything written about it, however, a few things did come up in our search one was duplication of chromosome 15, or Isodicentric chromosome 15 syndrome. We began to read about it. For more information you can read about Idic 15 at the following websites http://www.dup15q.org/understanding-dup15q/what-is-dup15q-syndrome/

http://ghr.nlm.nih.gov/condition/isodicentric-chromosome-15-syndrome

By reading this material we had a little better understanding of what Dylan was going to be like, but these were duplications of the chromosome and not a triplication. We read that 1 in 30,000 newborns are born with this. We read about the developmental delay that the children have, behavioral difficulties, mental retardation, autism, seizures and just so much more. It was truly overwhelming. We stumbled on an organization that was called Unique The Rare Chromosome Disorder Support Group. They were based in the United Kingdom. We wrote to them about what the geneticist told us about Dylan.

Several days later we received an email back from them and they informed us that they believed that Dylan had Idic 15. They signed us up with their organization and sent us a welcoming package that had names of other families who had children with rare chromosome abnormalities. There were families in the United Kingdom, and even many in the United States that had children who had Idic 15. We didn’t feel quite so alone anymore. We would identify Dylan’s disorder with Idic 15, however, he didn’t have a duplication, but a triplication of the 15th chromosome, so we still didn’t really know what to expect?

We contacted the Maryland Infant and Toddlers Program and was entered into Child Find. The sent out a team of assessors to see if Dylan qualified for this program. We shared with them all of Dylan’s health records. After the initial assessment it was determined that he qualified for help and right away they set up home visits from physical, and occupational therapist. These visits would go on once a week and they were not fun for Dylan and made us have to go outside on several occasions. The therapist would come in and ask us a slew of questions before they began to work on Dylan. This was done by twisting and pulling and contorting his little body in every way imaginable. He would scream and cry; it was heartbreaking for us as parents. They brought in a giant exercise ball and would place Dylan on it and roll him around on it. By doing this it helped to loosen up his tight muscles.

Dylan’s therapy went on for several excruciating months. He didn’t like whenever the therapists would show up, because he knew that they would make him work his body. We didn’t like to hear him crying in pain, but it was a necessary evil. I probably was the father from hell towards the therapist, because I would yell at them. They would always make me leave the room. I did start to notice that Dylan began to be able to do things that he was unable to do when before the two therapists showed up. He could now crawl, grasp items and then, he was able to sit up.

Dylan seen these two ladies twice a week for a year and the results were amazing. In the meantime, I had begun blaming everyone for the way Dylan was born. I never told her at the time, but I was sure it was my wife’s fault, perhaps it was the doctor’s fault, or even God? I then started blaming myself and beating myself up over it. It is hard to explain the darkness that some people go through when something like this happens. The tears that I cried and the anger and bitterness that was eating me drove me further away from my wife and my other two children.

I continued to angrily question God, “Why in the hell would you allow this to happen to this child? What kind of cruel God are you?” I’d scream through bitter tears. It was in one of those tear-filled rages that I looked at Dylan. He had now been able to pick himself up off the floor and navigate himself around the room using the furniture for balance. Then the words I heard echo inside of my ears and stabbed me right in my heart! “Stop feeling sorry for yourself! Look at your son, he is awesome! He is a champion. No matter how hard it has been on him he hasn’t given up. He has fallen down thousands of times, yet he still gets back up!” That day my 16 month old son taught me the most valuable lesson I have ever learned in my entire life and if I could share this with anyone this is very important. Never, ever give up! If you falter, or fail a thousand times, a million times; keep fighting the good fight! It was at that very moment in time my whole life changed! Dylan hadn’t given up on us and I would be damned if I would give up on him! (To be continued)