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Robert Bishop
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The cruelest illness

The HD nightmare
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Content 1999-2009
CureHD Foundation
All Rights Reserved.

www.curehd.org

As told by Kym Nicholson...
Christopher Dougles Youngblood was to be my awakening. I was very young, certainly not ready for a child. At the same time, I was excited about becoming a mommy.

We were told the disease that plagued my ex-husband's family was not to be worried about. It was an adult disease. If my son did happen to be afflicted with the defective gene, there would certainly be a cure by the time he was in his prime and beginning to show symptoms. This was our first clash with medical theories. I could never have imagined the events that would later unfold. They would change my life forever, in a way that no one's life should be lived.

Christopher was born on a beautiful, sunny spring afternoon. He was absolutely beautiful, and perfect in every way. He weighed in at seven pounds, two ounces and was nineteen inches long. He was also bald as a cue ball!

We were certainly the proud parents, probably patented the phrase. Everything was great for about a year. Then Chris's dad and I started to part ways and Chris and I moved back home to Illinois to begin our new life together. I was pregnant and his sister was due a few weeks later. It was just him and me against the world.

It was tough. I was a very young mother with two babies, barely a year apart. I did not have enough education to support a family. By the age of three, Chris's speech became slurred, and his gait was unsteady. He seemed to be such a klutz! It didn't take long for me to figure out what the problem was, but the specialists certainly took what seemed like forever.

We had lived with my husband's family for the first seven months of our marriage. I had seen my ex-mother-in-law suffer the wrath of Huntington's Disease. I knew what was happening. What I didn't know was how much time I would have with my son. Christopher led a pretty normal life for almost seven years. After that, little by little, everything that gave him independence was slowly stripped away. At first, it was the speech, initially becoming slurred, then impossible for him to form the words.

We took sign language classes to help keep the lines of communication open for him and for us. Then the fine motor skills began to deteriorate. As this affected his signing, he was losing all means of communication. His gross motor skills were also diminishing, but thankfully, at a slower rate.

By the time he was seven years old, it was next to impossible to understand much of anything he was saying. By age eight and a half, his sign language had suffered as well. We could only communicate basic needs... eat, drink, toilet. Then, at age ten and a half, he took his final steps, and never walked again.

Christopher was always happy, with a wonderful disposition. He absolutely loved people, life, and his family. There wasn't a person he met, that wasn't somehow touched more deeply than they had ever been by another child. Everyone adored him. The kids at school would compete with each other to be there for Chris. They all wanted to push Chris' wheelchair, help feed him, refill his water bottle, and write his work for him. The bonds that he had woven with his friends, the love that he instilled through everyone that he encountered, and the mutual respect and admiration that everyone had for him, were his reasons for living.

Throughout all the changes that occurred over the years, I was never prepared for what happened on February 7, 1997. It all started with a trip home to Illinois to visit his grandmother. Chris had not been feeling well that day, and was having sporadic movements in his left leg. These were movements that made his leg shoot straight up in the air, and then shoot back in a bent position. It happened in such a way that his knee would hit him, like a punch in the face.

Chris had zero reflexes with which to protect himself. When his leg would hit his face, he would scream in pain. No matter how many times we would hold his leg, massage it, or soak him in a warm tub, the movements refused to cease. By the next evening, Chris was literally exhausted. He'd had no sleep for two days and was absolutely miserable, bordering on delirious. His temperature shot up to 104 F. He was admitted after we took him to the emergency room and immediately put on injections of Haldol through his IV unit.

I had gone to school to become a medical assistant. I had devoured every piece of information on Huntington's Disease, and all pharmacology information on every drug that was being used to treat this disorder. I was terrified of Haldol, but I had seen all the suffering that Chris had endured the past two days and was willing to try just about anything.

The following morning, his neurologist came in to examine Chris, and then called me to a private family area. I knew what was coming before we ever entered that room. He proceeded to inform me that it was very important that I start making some decisions about Chris' treatment. Did I want him resuscitated should he arrest? How invasive did I wish the staff to be? Just how far did I want to take this?

I thought I was going to break. Nothing had ever hurt so much in my life. And who was I to play God, and choose whether my son should live or die, and when?

I came to the decision that if Chris should happen to stop breathing, I didn't want any heroic measures taken, and that he was not to be resuscitated. I justified this with the fact that if God allowed it to happen in the first place, it must be His will. That, and the fact that I couldn't bear to see him suffer needlessly. Huntington's Disease is relentless. It doesn't stop, get better, or give any hope. It only takes from the brain, muscular and nervous system, until there is nothing left to feed off. There is no treatment and no cure.

After two days of the Haldol, Chris was completely unresponsive and I refused another dose. I insisted upon valium. I knew that valium was very risky, due to the respiratory problems that can surface when used in children. I also believed it was the lesser of the two evils. After three doses, Chris calmed down. His leg stopped moving, and finally, he slept. He slept for hours and hours. I became uneasy, but convinced myself it was because of the lack of sleep over the last three and a half days.

My mother had come to the hospital to relieve me for a few hours. Normally, it was Mom that held the bedside vigils with Chris. She was absolutely in love with him. They had such a special bond, that it did not surprise me he waited for her to be there, before he awoke. I had been gone for about an hour when the phone rang and mom told me to get back up there. Something had happened, and it was good. I flew! I don't know that the car's wheels ever really hit the ground at all. I do know that I made that 12 minute trip in under six.

When I walked into the room, I was immediately in shock. I was seeing it, but somehow, my heart wouldn't let me believe it. Chris was sitting up, propped up on pillows, and smiling. His color was great, and he was completely alert and responsive.

I immediately said a heartfelt, "Thank you" to God, and burst into tears. Nothing has ever given me such joy and utter elation in my life. At the same time, I was scared to death. I was so afraid that this was just a fluke. I didn't want to hang my hopes just yet. I've never been a pessimist, but after seeing Chris so close to death earlier that day, I just didn't know what to expect.

Two days later, we took him home. Hospice was called in before we left the hospital, and had a hospital bed and all of his medications, syringes, and supplies delivered within an hour of our arrival. They became a big part of our lives from there on out. And they were wonderful. The day after we brought Chris home, the movements started again, and we battled to keep them under control. Chris was on a pureed diet and didn't have much appetite. He did however, drink liquids by the masses, as he kept dehydrating from over exertion. This went on for almost two weeks.

We bought a house, knowing we could not go back home to Michigan, and arranged to move our things. On February 22, 1997, I began hauling our things down. On February 23, we brought Chris to his new home. That day was a very good day for Chris. He had very little movement in his leg and watched his cartoons all day. We stayed busy unpacking everything. However, he had drunk only two ounces of water all day, and wouldn't take anything else. That night, he started having movements again, and was moaning in his sleep.

At seven the next morning, I went into his room to give him his medications, and immediately froze. He was so pale, almost gray, barely breathing, and his nail beds were dark gray. I was horrified, and scared to death. I went to pick him up, and his bed and pillow were saturated with sweat.

By eight o'clock, I had him in the E.R. again. By 3:00 that afternoon, he was looking more normal, and I decided that I would take him home. I brought an extra IV bag with me for the next day. Deep inside, however, I knew that I would never use it.

I laid him in my bed and talked to him all night. He didn’t appear to be with me, but there was a slight chance that he could still hear. I wanted him to know that I was there with him, and would not leave him. I told him to watch for the angels. They were coming, and when they did, it was okay for him to go with them. They would show him beautiful places, where he could run and talk, and play and he would never hurt, or be sick again. He would go to a place where he would always be happy and be able to fly.

Chris took his final breath at 9:15 on Tuesday, February 25, 1997. How appropriate that he would wait until it was just his grandmother and me to be there with him. The two constants in his life that had always been there through everything that he experienced, good and bad.

I do not mourn his passing, only my loss and the empty space that he once filled so perfectly. Chris can now do all the things that were taken from him on this earth. He can walk, talk, run, play, laugh and fly.

I realize now that Chris was my angel. He was sent to teach me about what true love, compassion, and patience is all about. He truly was the very essence of love. He instilled in me an appreciation for life that I would never have acquired any other way.

Christopher is my idol, my mentor, my life's greatest love, and my rock. I can do anything, just knowing that his spirit is always here to guide, love, and comfort me. Heaven has been graced, and I have been blessed immeasurably. God has given me the greatest gift of all. The privilege of knowing real love, the honor of having Chris for those few wonderful, but short years.

Used with permission; Faces of Huntington's by Carmen Leal-Pock
1998 Essence Publishing—All rights reserved.