Hunter's Story. Written by his Mom Vicie
My story is a bit different from most. I adopted Hunter so I pretty well signed on for this life. When you adopt a child there is a thing called full disclosure. That is when they give you the medical records for a child after you have committed to accepting him. That is when I first heard of 1p36 ( eye p thirty six as I called it then) deletion syndrome. I did a lot of research on goggle and printed it all off. I know Hunter was the second child born to his mom and dad who were both heavily into drugs and had been told that was the reason for his problems. When he was 3 months old he was removed from his home and placed is foster care. He had multiple holes in his heart and was given a very limited life prediction. He also had frequent bouts with pneumonia , which was greatly improved by getting a fundo plication. Hunter came to live with me and Trevor in Sept of 2007 at the age of 4. He was a tiny little thing very vocal and active. From the very beginning he had many seizures a day . The foster parents said he had not had any seizures so I was wondering what I was doing wrong. The Neurologist was pretty sure he had been having them all along they were just not typical seizures and probably no one recognized them as seizures. In June of 2008 I took him to see a geneticist who knew nothing about the syndrome and suggested I find an on line support group for information. That was how I found this great new family. I heard of a conference happening in July and decided to go to meet some of the people I had been chatting with. Hunter was a great traveler as long as Lee Greenwood’s Christmas tape was playing. Yes 10 hours to Indianapolis . The very first family we met was Erin and Shelby. They were pulling in at the same time. It was at this conference that I learned the error of my ways, they are quick to tell you it is one p three six. Not eye p thirty six. Hunter was not a people person so I took a sleeping bag and zipped him up in it and we stayed in the corner of the room on the floor. As we did at every conference after that.
Life was not always good with Hunter. He still had many bouts with pneumonia. His chest muscles were just to weak to cough effectively. His heart healed itself over time leaving only one little pinpoint hole that was not in an important part of the heart.
Life was good and happy most of the time. When he hit a growth spurt he developed scoliosis. It progressed slowly until he was 12 and it had a 20 % increase in less that a year so the orthopaedist decided surgery was necessary. He was twisting so badly it was pulling his G tube out of his stomach. His right lung was non functional it was so compressed. April 20 2016. He had surgery for rods. April 20 2016 I lost my precious baby boy. The doctor said due to the 1p36 his vessels did not respond to being cut the way they should have and did not constrict. His blood pressure dropped and they could not get it back up. Every day I have to remind myself there was no other option. I had to give him a chance. Every day my heart bleeds .