My Perfect Angel, Alyson
By: Jeff Hansen
Tags: Hope, Seizures, Inspiration, Disease, Health

My wife, Jessica, wrote this story for a school project when she was 14 years old. These are excerpts from her teenage journal and her added commentary for the project. As Alyson deals with another episode in the local ICU, Jessica found what she had written nearly 20 years ago. It is an eyewitness account of the early days of Alyson’s disease — the disease that continues to impact Alyson on a daily basis. Throughout it all, Alyson remains the most loving, caring, and irrefutably selfless woman I’ve ever known.

It was a stormy night, November 2nd 1994. Mom was in labor with the seventh child in our family. We were all over at the next door neighbor’s house where she was babysitting us. When mom had not had the baby by 9:00 pm, we all went to bed.

Later that night, around midnight, Granny acme in and told us that we had a new baby sister! We were not all that excited, because we were half asleep. The next few months were fun for us. During this time, we lived at my aunt and uncle’s house so the baby had a lot of people to hold her.

For about three months, she was just called ‘Baby’ until our parents came up with the perfect name for her — Alyson Shirley Lockhart.

Alyson was born during the same time that we found out that my aunt’s baby was dead. She was stillborn. At first my aunt was kind of bitter about not having her baby while we had Alyson, but after a while, she got used to the idea and Alyson was a very big comfort for both of our families. She was a big comfort then and has been ever since.

***

Throughout her early childhood, Alyson never really had a very secure home. We were always moving around and never stayed in one house for more than a year; until she was about three years old and we moved to Woodland Hills, Utah.

All throughout her life, Alyson was the sweetest, most adorable person. She was always smiling and always willing and happy to do whatever you asked her to do. She was never shy, and she would talk to anyone. She played the piano very well and before her next lesson, she would have everything memorized. Alyson was everyone’s best friend and everyone loved being around her because she was so sweet. Alyson had a lot of really close friends who would call her every day and were always there for her. But over this past year, so much has changed. For everyone.

***

January 2nd

It was Thursday and I was in the living room doing homework. Mom was in the living room talking to me when Alyson, who was supposed to be in bed, came up to say goodnight to mom. As she was over to the couch and sat down, I looked up at her and noticed a little movement on the right side of her face above her lip. It was really weird and I didn’t really think anything of it until later, when it really changed all of our lives forever.

***

February 22nd

I had just come home from Young Women’s and I was lying on Mom and Dad’s floor talking to mom, when Robyn came up from downstairs. She said that every night she couldn’t go to sleep because Alyson would wake her up and she wouldn’t go back to sleep. Mom asked her what Alyson was doing to wake her up every night. Robyn told her that she would wake up shaking. After hearing this, Mom was very alarmed so she made Robyn go downstairs and get Alyson out of her bed and bring her upstairs so mom could talk to her. When Alyson came up, Mom asked her if she remembered waking up at night and shaking. When she said yes, Mom asked her why she didn’t come up and tell her. She said because she was always so tired and would just go back to sleep when she finished shaking. That was when Mom saw it — the tremor under her chin. She could not so much see it as well as she could feel it. When she put her hand under Alyson’s chin, she could feel it quiver. It wasn’t continuous, but it was often enough to bother her.

***

February 27th

As I looked over at the blinking digits on my alarm clock, I realized it was 2:30 am. Then I heard it; the pounding that had woken me up. It sounded like someone was slamming their fists on the wall, trying to put a hole in it. As soon as I realized that it was coming from the girl’s room across the hall, I jumped out of bed and ran to see what it was. As soon as I was in their room, I turned on the light so I could see what was going on. As I stood there and stared at her, I couldn’t move for about 10 seconds. I was in shock because of what I was experiencing. After those 10 seconds, I finally came to and rushed over to Alyson’s bed to help her. Alyson was on her bed. Her body was shaking uncontrollably. She was choking and kicking the wall at the same time. As all of this was happening, I looked closely at her and realized that she wasn’t breathing and she was slowly turning purple. After her spasm had stopped, she seemed just find and back to her normal self.

***

March 14th

Mom took Alyson to an Iradologist. He looked at her and she took some tests and found that her pupils were different sizes and she wasn’t getting enough oxygen in her brain. The iradologist gave her some medicine to take; they stopped the spasms during the night. After a while, Mom decided it would be better for Alyson if she was on a no sugar, no dairy diet. So, she started eating and drinking substitutes.

***

April 24th

Mom and Alyson met Dr. Bale, a pediatric doctor at the Primary Children’s Hospital in Salt Lake City. Somehow, he had found out about Alyson and asked if he could be the doctor that worked on her case. Later that day, Alyson had to take some blood tests. When they got the results back, Dr. Bale took mom aside and told her that Alyson had a disease called Fazio Lande. That was all he could tell her. It was a pretty serious disease and he didn’t want to be the one to tell her what could and most likely would happen to my little sister. That afternoon, as soon as she got home and late into that evening, Mom was on the internet looking up this disease that had taken over my eight year old sister’s life. When she was finally got the information that she was looking for, Mom just broke down. There was no treatment and no cure and the person would most likely die in two years.

***

May 6th

Alyson went to the hospital for a spinal tap, an EMG and more blood tests. The spasms that had usually occurred during the night started coming more often and in the daytime too. The spasms would usually occur right when she woke up. Right after the spasm, she would not be able to talk for about 10 seconds because her tongue would be paralyzed.

***

May 11th

The spasms had become so usual and regular that Alyson would know when they were coming. She would stare at you for a few seconds, waiting for it to overtake her. Her eyes would start to flutter and she would fall to the ground convulsing. Meanwhile, she had no use of her tongue; it would go numb. Because she couldn’t feel it, it would go to the back of her throat, blocking her airway, causing her to drool during and after every spasm.

***

May 18th

Eventually, the tremor moved down her throat, which affected her speech and the way she talked a lot. One day, while she was sitting on the couch, one of my younger brothers asked her if she would read him a story. She said yes and started reading. After one story, she said that she didn’t want to read them anymore. The boys then begged and pleaded over and over again, but to no avail. She looked up at my mom and told her that it didn’t feel good reading out loud. My mom told her that she didn’t have to so she quietly got down off of the couch and went to her bedroom.

***

May 30th

Mom and Alyson went up to Salt Lake to see some doctors. Alyson went and saw two different doctors. They both had heard about her case and both wanted to work on it. After hearing of her symptoms, they had both done extensive research and thought that they both knew what was wrong with her, and they both wanted to drug her for something so completely different than the other. When they talked to Mom about it and asked her if they could treat her for the things that they thought she had, Mom said no, because the side effects were very damaging — one of the side effects was liver damage.

***

June 1st

Alyson’s speech is getting worse and worse every day. She rarely talks and when she does, she has to try two or three times before she can get it out. Even then, it is very hard to understand what she is saying. Whenever she talks, which is not very much, she seems to be out of breath. Alyson will never talk to anyone outside of the family because she is embarrassed that it takes too long to get the very smallest sentences out.

***

June 5th

Mom took Alyson to see a chiropractor, Dr. Lafferty. He did some tests and found that Alyson has a weakness on the right of her head above her temple. Also, when she has a seizure, the paralysis of her tongue lasts longer, as well as her seizures. During all of this, she is still conscious and can hear everything that you say to her or anyone around her. She can still hear the same as she can regularly, except she can’t respond.

***

June 26th

Alyson had her first grand mal seizure. She was playing piano when she felt a big one coming. She ran into the living room where Mom was, but she wasn’t quick enough. As she was running, she felt it coming and she fell to the floor. She banged her head very hard on the floor, her eyes rolled to the back of her head and she started convulsing really bad. During this seizure, I saw her do something that I had never seen before. She had no control whatsoever over the use of her left foot. She would hit it against the floor very hard over and over again.

***

July 2nd

Today, Alyson had to with Mom to Primary Children’s Hospital to get her IVIG done. Usually when Alyson gets her IVIG done she doesn’t do too well for a couple of days. On the way home from Salt Lake, Alyson had two seizures. Then she had another one right when she got home in our tiled mud room. She wasn’t expecting it at all so she just fell right there. As she fell down, she hit her head against the corner of the door really hard. When she came to, we found that she had cut open her head and it was bleeding.

***

July 13th

It was Sunday and we were all in the kitchen having our usual after-dinner junk snacks. Alyson was going to have a seizure so she ran over to us. None of us realized what was going on or that she was having a seizure so she fell to the wood floor HARD. After she had her seizure, we were all waiting for her to come back. She didn’t. For about three minutes, she was unconscious. It was so scary.

***

July 23rd

Alyson had not been doing too well for the last few weeks so she could not be left alone at any time for any reason whatsoever. So, we each had to take turns sleeping with her everything night, just to be there in case something happened. It was my turn to sleep with and watch Alyson that night so I brought her magnetic mattress upstairs to the living room and we went to bed. At about 2:00 am the next morning, Mom came in and told me that she would take over and I could go downstairs to my bed so I could get some sleep. I happily complied.

About an hour and a half later, Dad came down to mine and Corrie’s room and told us that Alyson was having one continuous seizure and Mom was going to take her to the emergency room to see if they could anything for her. Corrie needed to go with her.

Stuff like this really freaks me out so I was beside myself with fear. As I ran up the stairs, I could hear the familiar sound of Alyson’s convulsions. Then as I ran into the kitchen, I saw her. There she sat, helpless in her wheelchair, shaking uncontrollably. It looked like she was having a regular seizure except it wasn’t stopping after a few minutes like it usually did. Finally, Dad carried her out to the car and Mom and Corrie sped to the hospital. When they got there, the nurse took some tests, gave her some medicine that would stop the seizures, and helped put her on a stretcher and sent her to be life flighted to Primary Children’s.

***

July 30th

Alyson spend about a week in the hospital recovering from all that had happened to her. They had to keep her under surveillance because she had an allergic reaction to some of the medicine that they gave her. They also had to keep her there because they had to see if the medicine that they were giving her for seizures was working and keeping the seizures under control.

When she finally came home from the hospital, Alyson was doing pretty well. Her seizures would only occur about two to three times a day and considering everything, she was in pretty good spirits.

While she was at the hospital, the doctors did some tests and kept her monitored. They had also been doing some research and felt pretty confident that they knew for sure what this disease really was. They said it was a rare, progressive brain/seizure disorder called Rasmuessen’s Encephalitis. About three in every million will contract this disease and there really is no cure.

It doesn’t come as a result of something else. It’s just kind of like cancer — you just get it.

After finding out what this disease was, we were all extra careful with Alyson but that only lasted about a week. We all knew she was milking this for all it was worth, but hey, who could blame her?

***

Alyson would always fake it (or so we thought) just so she could get a lot of attention. But this time it was for real. On the day before Thanksgiving, Alyson woke up and couldn’t even lift her head or her arms or any other part of her body. She couldn’t eat on her own. She couldn’t dress herself on her own, and even then, someone had to hold her.

***

On the outside Alyson is dealing with this really well. She NEVER complains and always has a good attitude about everything.

She attacks us with the drool that she can’t control that is constantly coming from her mouth. She can even laugh with us when we tease her about the way she talks and laughs.

On the outside, Alyson looks as if she doesn’t have a care in the world. But deep down inside, I know she is hurting.

Her friends are rude to her because of something that is not her fault. It is something that she can’t control. She comes home crying, telling us what some mean person said to her that day. All she wants is to be accepted, respected and included. She wants to be treated like any other normal person, not like she’s a fragile invalid.

She is losing her hair. Clumps come out daily. She comes and asks all the time if one day soon she will no longer have any hair. She worries all the time about becoming bald and looking like a cancer patient. Not long ago, she had to get a haircut so that the hair loss wouldn’t be as noticeable.

***

Throughout it all, she is happy. She isn’t quite her normal self yet, but she’s getting close. She continues to amaze me daily. She is my hero.

If I could I would take this from her in a heartbeat. I would change all of this so she could live a normal life like other little girls.

***

To some people Alyson might seem like a sick invalid who will never be whole again. Not to me. Yes, she is sick, but she is the most beautifully whole person that I know. She can’t talk right and she has seizures regularly, but to me, it is not the outside that really counts, but what’s on the inside. That is what makes Alyson a perfect little angel to me.