Anthony Orjuela

We are The Orjuela Family. We’ve been married for 10 years and my husband has been in the Marine Corps for 14 years. We have two wonderful but crazy kids; Melissa who is 7 and Anthony who is 3. I want to say we are all very outgoing, but mostly my husband and kids and I just try to catch up. Because we are a military family, we move a lot, so home to us is where the Marine’s sends us and home right now is Jacksonville, NC.

Anthony is a wonderful, energetic and playful little boy, he is non-stop. My pregnancy with Anthony was wonderful, no problems whatsoever. My friend had just giving birth a couple of months before me and had banked the cord blood and she was the one that told me about it. I thought about it for a couple of months before convincing my husband to the idea. Just the thought of “what if?” it’s what convinced me to do it. I Really didn’t know that much about it, just what I had read on their pamphlet and also knowing that maybe if my daughter needed it, she might be able to use it as well. Well, my labor went smooth, 4 hours long. When he was born, he had meconium, but it wasn’t anything new to us since our daughter was born with the same and she never had any problems. He did have a little problem trying to breathe, so they took him to give him some oxygen. Right before they were about to discharge us from the hospital a cardiologist came to see us and told us Anthony had a heart murmur, but with no complications.

We went home and he was a normal little boy to me. Breastfeeding was painful though, I didn’t understand why. He was never able to latch right. I had to open his mouth and move his tongue around every time so he would be able to suck and not hurt me so bad. I did noticed that he wasn’t reaching his milestones like our daughter and other kids did, but everyone told me not to compare, that every child was different. It took him a while to be able to sit up on his own and when he did, he was never straight; he would hunch over to the left and wouldn’t stay for long.

When he was able to stand up, I noticed that he was always on his left toe. He was able to walk at 13 months and the first thing I noticed was that after a while, he was still walking like he had just learned to walk, he wasn’t progressing. He was also falling a lot and hitting every corner of the walls. He was also not moving his left arm when he walked or ran. On December of 07, he had a bad cough, so I took him to see a doctor. In the military you see many different doctors which made it hard to get an earlier diagnosis for Anthony. So when we got to see Dr. Paulsen for the first time, he looked at him and within the first 10 minutes had asked me if there were any developmental problems with Anthony, I started to cry and couldn’t stop.

Finally someone saw what I was seeing and it wasn’t all in my head. He referred us to Dr. Karen Harum a Developmental Pediatrician in Wilmington, NC.

When we saw Dr. Harum in March 08, we went in and she told us the possible causes but wouldn’t know for sure until an MRI was done. Just knowing the possible diagnosis was hard enough. My husband and I just sat in the car outside the doctor’s office for 5 minutes, just trying to get it all in, then my husband’s phone rang and he was told that he was deploying in two days instead of a week and a half. We couldn’t talk about it anymore. We had to get home and he needed to start packing and finish his “honey do list” around the house in two days and I had to get the kids ready for an earlier goodbye.

Two days later, my husband was deployed to Afghanistan, so he left without knowing what was wrong with our son. In April I got the results of the MRI and it showed that there was a lack of oxygen in his brain and he had Cerebral Palsy and Apraxia of Speech. It was devastating. I thought that the life I pictured for him wasn’t a possibility anymore. I sat in the car for almost 30 minutes crying and just thinking about what to do now, and what was going to happen to my baby. The drive home was an hour long and unbearable. And now what I kept thinking was how I was going to tell my husband what was wrong with our son and when was I going to be able to tell him, since calls were really rare.

That first night I couldn’t sleep. I was alone and had no shoulder to cry on and no one to talk to. The next day my husband was able to text me on my phone from his computer. I asked him to call me, but he couldn’t, they were about to go on their mission, and he didn’t know when he was going to be able to call me again, so I had to tell him over his computer. It was hard for me to tell him that over a text and I know it must have been devastating for him too, knowing he was miles away from home and couldn’t do anything about it, nor console me or hold his son in his arms. I had to be strong for both of us, I had to show him that we were okay, he was okay and that we were going to be able to get through this so he could keep his mind on his mission and not worry about us back home. But what I was typing and what my heart felt were not the same, I wanted him home, I didn’t want to do this alone.

After his diagnosis we started our new weekly routine. He gets Speech four times a week. Physical Therapy two times a week and Occupational Therapy one time a week. He started to wear his DAFO’s. We also did the Hyperbaric Oxygen Therapy (HBOT). He has made such an improvement after the HBOT. He continues to make progress but we are hoping that with the re-infusion of his cord blood he can do so much more.

I heard about the re-infusion of cord blood a couple of weeks after Anthony was diagnosed. For some miracle I turned on the Today show and there was Dallas Hextell and his parents talking about it. I wrote down as much information as I could and got in touch with Duke and we started the process. They told me how much it would cost and that Insurance won’t cover it and I took a deep breath and said ok, I have to do it, I knew my husband would say yes. So here we are a month away from the process and hoping you can help us.

Thank you so much,

Johanna, Carlos, Melissa and Anthony