By Jeff 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.)