Through the eyes of a friend

[lauren54]

This is a true story, about a dear friend of mine who fought a year and a half long battle with a painful disease called adrenoleukodystrophy. i'm not going to say much about it in this intro, but what i will tell you is that it is rare, and that most people have never heard of it. Through the Eyes of a Friend

Jessica's Battle Through Adrenoleukodystrophy (ALD)

There are certain things in life that we do everyday and never think twice about. Things like breathing, laughing, walking, talking, eating, swallowing, and remembering. We have this idea that these things will stay with us for as long as we're alive, we never think that one day, all of these things will be gone, and that we would wind up being confined to a bed, fed through a tube, paralyzed, blind, and largely unaware of our surroundings. That is until you or someone you love gets the diagnosis of a horrible disease called adrenoleukodystrophy. In the following text, you'll learn about a very brave young girl, who faced such a diagnosis, and how I, her friend Lauren dealt with it. Look deep into the story, beyond the sad words, and difficult concepts and what you will find is a story of hope, love, devotion, and friendship. Come along with me on this journey in which I discover that all isn't what it seems to be, and that even the best doctors can't find the cures, that we wish they could find. This story is told through my eyes, and I hope that if you're reading it, that you will come away feeling not only sympathy for the children who suffer, but also a feeling of happiness, because you can enjoy life.

The most important thing I know wasn't taught to me in a classroom, and I didn't look it up on the Internet. I learned it through an experience I had with a very special little girl, a girl whom I still talk to today, even though she can no longer laugh at my jokes, or answer my questions. She is in a way, like my diary, someone to pour my thoughts and feelings out to, who doesn't have an opinion, and who won't get angry if I say the wrong thing. She is to me, a very special person, who taught me a very valuable lesson that I will take with me as I go through life.

I remember the day like it was just yesterday. It was January 15, 2003. I was in this Internet chat room, and was talking to a young girl who called her self Cookie. Cookie was 12 at the time, and up until a few years ago, had a really bad childhood. She confided in me, that her parents tried to kill her, and that her dad even tried to rape her. But, nothing she could have told me up until that point, could have prepared me for the words that were about to come out of that screen. After a few minutes of silence, she said the words that I will never forget, even today, they bring tears to my eyes, "Lauren, I have adrenoleukodystrophy." That word alone, adrenoleukodystrophy, had me scared.

The word comes from the Greek words ad meaning near, renal meaning kidneys, leuko from the word leukos meaning white, and referring to the white matter of the nervous system, dys meaning bad, and trophy meaning nutrition. Adrenoleukodystrophy (ALD) is a serious, progressive, inherited, metabolic, neurological disease that results from the body's inability to break down a certain type of fat. This inability to degrade this fat, results in the gradual loss of the myelin, which is the fat over a nerve cell. This leads to the person becoming blind, deaf, unable to speak, or move, and eventually leads to a vegetative state and coma. It's a rare genetic disease that is so rare in fact most doctors don't know anything about it. It takes everything from its victims, including their sight, speech, hearing, memory, movement, and all the things we take for granted. It does this within a period of time that can be anywhere from 6 to 24 months after the diagnoses has been made. At first, I didn't believe her, no refused to believe her. How could this be I thought. It's an x-linked trait, it only affects boys you're a girl; so started the journey of ups and downs and questions. I had promised her that I would be there for her, and that I would do whatever she wanted, and whatever I could to help her.

As the months went by, and winter turned to spring, that was when she started to forget things! There would be times, when I would talk to her, and she wouldn't know who I was. It was almost like we had just met that day even though I had been talking to her at that point for almost 4 months. It was at this point, that I also grew to understand not only what the disease did, but how it affected the whole family. I would spend hours on the computer, reading countless articles, anything from genetics, to reviews of a film (Lorenzo's Oil) about a young boy named Lorenzo Odone, who had beaten the odds and survived ALD. I read everything and anything that dealt with ALD. Then one day, she called me, and I couldn't understand anything she said. It was almost like talking to someone who had a few too many drinks. At this point, I knew that our conversations would soon be a thing of the past.

In early July, as I prepared to leave for a summer program for the blind, I got a call from her grandmother, she informed me that Jessica, yes her real name is Jessica, was no longer able to speak, or swallow. Her inability to swallow, forced them to put a NG (nasogastric) tube in, so that she could get nutrition. Feeding tubes, painful muscle spasms, seizures, respiratory infections, bouts of fever, repeated blood tests to check for high levels of fat, dementia, suctioning to clear the excess saliva from her trachea, all part of what an ALD child must endure, for months, and maybe years. At this point, I was so depressed, that I started to take it out on my family, I would lash out, and do things that I wouldn't normally do, like lie, all because I was angry, angry at the fact that this young girl who I had grown to love as a friend, would never know what it is like to dance at her senior prom, or graduate from high school, or get married, or feel the weight and experience the joy of her first born, as the doctor places it on her chest. All she would know and feel is pain, pain as one by one, each nerve turned into a mass of putrid biochemical matter, and every muscle wasted away, until all that remained was an empty shell.

By September, the adrenoleukodystrophy had reached the point, to where she was blind, unable to speak, paralyzed, and comatose, no longer able to hold the phone up, her grandmother would sit for hours holding that phone up to her ear, so she could hear my voice, sometimes I would sing to her, and sometimes I would tell her stories. If she was having a seizure, the songs that I would sing would have a calming effect that would help her ride it out. But, in early October, no song or story would bring her out of the seizures, there was nothing I could do for her now, except wait, wait for god to call her home wait for the grim reaper to summon her. There were many days I would come home from school, wondering if she had died, wondering if she was still hanging on. Wondering how I was going to keep strong.

It's been just over a year now, and I'm happy to say that Jessica is still alive. She is still confined to bed, and still suffers from many seizures, and has recently started to spit up blood. I know the time will come when it is time to say goodbye, but until then, I will always remember the 4 months that her and I talked, laughed, and learned, but, the most important thing I learned, wasn't anything that she taught me, or anything I taught her. The most important thing I learned was that adrenoleukodystrophy isn't just a long word, or a rare disease. Adrenoleukodystrophy affects people. So when I do the research, no matter what I'm doing it on, I now know that there are people who are afflicted with these conditions. It's not just a disease it's a person, a person who is crying out for help, a person like Jessica, who is waiting for the cure to be found.

"If they would find a cure, when I'm buried into heaven, I could still celebrate, with my brothers and sister there. And I could still be happy, knowing that I, knowing that I, was a part of the effort."

Mattie Stepanek, from the book Hope Through Heart songs.

[Jenny]

I have tears in my eyes from reading this.......

[Mairi]

That was beautiful, truely beautiful.

[Earth-Angel]

Jessica has a wonderful friend. Truly moving.

[lauren54]

Yes, she did have a great friend, her time here was very short, but I helped her make it through.

[Steel2Velvet]

Your effort here is a fine tribute to your friend. Many times, writing about a thing helps us to better understand; not only that thing, but ourselves. You have a very good heart and if you remain focused, will help many as they travel through life.