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Dancing With My Father
Taylor’s story about life, loss and ALD
by Taylor Kane
It was a great three years while it lasted. That’s how old I was when we found out that my dad was really sick. My mom didn’t tell me at the time because I was too young, but my dad had been diagnosed with a disease called Adrenoleukodystrophy. ALD for short. The doctors said that over the next year, he would stop being able to do certain things, like walk, talk and swallow, and that he might not understand what was going on around him. They said he only had one to three years to live. The doctors also told my mom that my dad had passed the ALD gene down to me, and that I was a carrier of the disease.
My family went through a lot over the next few years. I learned a lot about life - my mom says maybe too much. I am ten years old and in fifth grade now, and doing great. I love to sing,dance and act. I also love to help people and to make them smile. One day, I want to change the world and make it a better place. Most importantly, I want to help find a cure for ALD so no one else has to lose someone they love to this disease. This is my story.
Life Before
My mom, Diane, has always told me that the day I was born was the happiest day of her life. She and my dad, Jack, had just been married the year before. They were both lawyers, but my mom took some time off from work when she had me. When I was in my mom’s tummy, my parents didn’t know if I was a boy or a girl. They agreed on the name Shaun Joseph Kane if I was a boy. I wasn’t, and I became Taylor Caroline Kane.
From what I remember, and from what everyone tells me, my dad was a man with a great personality. He was a real people person. He loved to talk and make people laugh and smile. His friends called him "Gabby" because he talked so much. My mom says that when sales
people would call the house, he would ask them so many questions and talk to them for so long, they would hang up on him!
My dad grew up in Philadelphia. He worked as a longshoreman when he was young, sewing bags of cocoa beans on the docks where ships come in. No one in his family had gone to college, so my dad was determined to graduate. He knew then that he wanted to help people by becoming a lawyer, so he worked his way through Drexel University. Then he went to Temple Law School. He had to study really hard, but he made it! Eventually, he did become a lawyer, and many of his clients were longshoremen who got hurt or had legal problems.
My dad was always helping people. My mom says that his clients used to call him at home, sometimes at 2 in the morning. He always took their calls. Even after he became a lawyer, my dad would spend nights in the streets of Philadelphia walking home men who were too sick to get home by themselves. My mom says what she liked most about my dad was that he liked everyone for who they were as a person. It didn’t matter what they did for a living, how they dressed or how much money they made. Everyone was equal in his eyes. He never had a bad word to say about anyone. People loved my dad, too.
My dad had an identical twin brother named Jimmy. He also had a daughter named Tina from his first marriage. Tina is my half-sister and she is awesome! When I was 18 months old my brother Matthew was born. I remember when my dad took me to the hospital to see Matthew. He brought me in the hospital room and I saw my mom holding my brother. I was mad. Jealous. I thought my mom should only hold me. I said, "Daddy, take me home," and stormed out of the room. I learned to love my brother. Matthew was a happy baby. He spit up a lot. My dad wore a raincoat to burp him. Matthew is just like my mom, and I am more like my dad. We were all so happy.
After I learned to walk, my dad played with me all the time. It was fun! But it seemed like it was hard for him to play sometimes because he was having problems with his legs. My dad always held me on the slide in our backyard and I slid down onto the lawn. I loved my dad so much. He was a perfect dad. Until something went wrong.
My mom said my dad started acting very strange. He was sleeping a lot, and some days he couldn’t get out of bed to go to work until lunchtime. Sometimes, he wouldn’t come home for dinner. Other times, he would go out driving and not come home for hours. He didn’t remember where he had been. It was scary. My dad went to a doctor and they told him to get a CAT scan of his brain.
That’s when my mom and dad found out that he had ALD. It was very sudden. My mom didn’t tell me at the time because she thought it would make me too sad and confused, but the doctors told my dad to stop working. They also told him to take one last vacation because he didn’t have much time left.
Adrenoleukodystrophy (ALD)
Here is what I know about ALD. One out of every 18,000 people is diagnosed with the disease. The disease is hereditary which means it is passed down in your family. Males get the symptoms of the disease, and females are carriers. Sometimes females get symptoms, too, but their symptoms are much less severe, and almost never life-threatening. ALD usually affects boys when they are between 4 and 10 years old. My dad didn’t begin to have symptoms until he was around 45. Once the symptoms begin, there is no treatment or cure. Boys or men usually lose their ability to hear, swallow, walk, talk and think, and then they go into a coma or die within a few years.
If a boy knows he has ALD before he gets symptoms, sometimes he can get a bone marrow transplant or take a medicine called Lorenzo’s Oil. Both of these can prevent the disease. But they don’t always work. A bone marrow transplant is very hard on a boy. They take the marrow out of a healthy person’s bones, and replace the sick boy’s marrow with the healthy marrow. It is a dangerous procedure. They don’t do the procedure on men, because their bodies usually reject the new bone marrow. The doctors told my dad not to try a bone marrow transplant because he wouldn’t live through it.
My mom and dad didn’t know it at the time, but now we know that my grandmother on my dad’s side was an ALD carrier who passed the disease down to my dad and my uncles, and also my aunt, who was a carrier. My dad’s twin brother, Jimmy, started getting symptoms shortly after my dad did.
When a woman is a carrier, all of her children have a 50 percent chance of getting the ALD gene. That means if she has a boy, there is a 50 percent chance he will develop ALD and start getting symptoms. If she has a girl, there is a 50 percent chance she will be a carrier.
Since I am an ALD carrier, there is a 50 percent chance my children will get the ALD gene. Sometimes carriers develop minor symptoms, like weakness, pain and problems walking. My aunt was a carrier and experienced some of those problems. Being a carrier is very scary.
There really needs to be a cure for ALD.
Hard Times
Things were getting hard for my mom. They were really getting hard for my dad. My dad wanted to keep working. But the other lawyers in his law firm thought he was too sick. Because the disease affected his brain, my dad became very confused. Even after he lost his job, he would try to go to work. He would sit down on the bed to tie his shoes. He would try to tie his shoes for hours, but he just couldn’t do it. He got frustrated. That was a sad time. My mom said that work was his life. Sometimes my dad would tell us he had gone to work that day, even though he really never left the house. The scary thing was that he really thought he had been at work.
My mom had to keep working to support our family. So since my mom had to work, I had to go to daycare a few days a week. My brother and I also had a babysitter to take care of us and my dad when my mom wasn’t home. Actually, we had two babysitters - Paula and Melissa. Paula came in the morning and Melissa came in the afternoon.
In the beginning, my dad could still walk a little but he had to use a cane. We always had a couple of canes in the house. My dad used to sit outside and pretend his cane was a gun. He would pretend to shoot cars. He was doing some really strange things.
He was also starting to lose some other abilities. He couldn’t shave, take a shower, use the bathroom and he would constantly sing the song "Sweet Home Alabama" over and over every day.
The doctors told my dad that he wasn’t allowed to drive. My mom took his car keys away. He used to try to steal other people’s keys. He didn’t understand why he couldn’t drive. One time he took the car and we didn’t know where he went. My mom had to call the police. She was worried that he might get hurt or hurt someone else. The police brought my dad back and he had hundreds of items from the dollar store in the trunk of the car. Seven fly swatters, and a bunch of other junk.
Eventually, my dad lost almost all of his abilities. He couldn’t walk at all, and he couldn’t even swallow. He could only talk a little bit. He had to have surgery so the doctors could put a feeding tube in his stomach so he could get food and water. My dad had to stay in a hospital bed in our dining room. I don’t think he knew who we were most of the time. Sometimes he thought his hospital bed could fly. Matthew and I would sit on his bed and he would fly us around the house.
My mom called hospice when my dad became really sick. There were two nurses named Lisa and Kathy who came a few hours a day. They were really nice. We celebrated holidays and birthdays with them. We hardly ever went out anywhere when my dad was sick. I was scared, things were getting worse.
The Night the Nurse Came
When I was five, I started kinder-garten. My teacher’s name was Mrs. Gibson. Her husband had recently passed away.
She told the class all about him. His nickname was Hootie. I loved kindergarten.
My dad was still getting worse. He had been sick for almost two and a half years. He lost more and more weight. He didn’t know who we were, and mostly just stared at the walls. He tried to talk by using his fingers. One finger for "yes," and two fingers for "no." After a while, he didn’t understand the difference, and would hold up three fingers. Sometimes he would just put the covers over his head. My brother and I would lie in bed with my dad and read to him. It was sad to see him suffering. He was on hospice for a long time.
In December, my dad had to go into a hospital for a few days because he was becoming sicker. It was getting close to Christmas. My brother and I were so excited for Christmas, but we wanted our dad to come home.
On December 20, 2003, late in the evening, our nurse Kathy came in and told my mom something. Then she walked over to me. She said, "Taylor, I have to tell you something. Your dad passed away a few hours ago." I burst into tears. The nurse told me I would be alright. I didn’t think I would be alright.
My dad’s funeral took place right after Christmas. There were so many people crying. Tina, his twin brother Jimmy, his sister and all of his great friends. I remember riding in a limousine. That day was terribly sad.
When I went back to kindergarten, Mrs. Gibson was really nice. She said my dad and Hootie were together in Heaven playing cards and having a great time. Everyone in my family had to adapt to my dad not being there. That was the saddest year ever.
Life Goes On
It was sad without my dad. But time passed, and things got better. I still thought about my dad, but not all the time. I tried not to think about his death too much. I knew it would just make me more sad. I tried to think about good things that would make my dad happy.
For I while, I was scared whenever my mom went out because I thought something bad would happen to her too, and I wouldn’t have anyone left. It took a while, but I got over that fear. I played with my friends a lot. That made me feel better. It also made me feel better to make other people happy. Sometimes, my mom would take me to a nursing home and I would sing for the people who lived there and talk to them in their rooms. They seemed lonely, and they were happy whenever I came.
My dad’s twin brother, Jimmy, passed away from ALD about one year after my dad. That made me sad again for a while.
A couple of years later, my mom got remarried to a man named Jim. I was the flower girl at their wedding. We moved to Mount Laurel.
I am 10 years old now, and I am happy again. My stepdad is really nice. I know my dad would be glad that Matthew and I have a father figure to take care of us. My life is good.
Sometimes I think about my dad and how he will not be able to do certain things with me like walk me down the aisle when I get married and see all the plays I am in. That still makes me a little sad.
When my dad first got sick, my mom and dad and some of their friends created a charity run called the "Run for ALD." It is a 5K run and 1-mile walk held every year at the Cooper River Park in Pennsauken. It is a lot of fun. You can run or walk and win prizes. Hundreds of people attend every year. The event raises money for ALD research. This year will be the seventh annual Run for ALD.
I am really involved in the Run for ALD and trying to raise money for ALD research. So far, the run has raised over $130,000 to help find a cure for this disease. Every year at the run, I sing a song dedicated to my dad. The song is called Dance with My Father. It is about someone who doesn’t have a father anymore and is looking back on her childhood. All she wants to do is dance with her father one more time. That song really reminds me of my dad. Whenever I sing it, I imagine what it would be like if I could dance with him again.
I’ve learned a lot in the past few years. I’ve learned that if someone you love dies, you will eventually be happy again. Even though you will still miss that person, you will smile when you think about them if you do something good in their memory. That’s why I like raising money for ALD research. I do whatever
I can, like collecting donations and selling lemonade. If they find a cure for ALD, thousands of boys and men will be saved from this horrible disease. No one else will have to suffer like my dad did.
I believe my dad is still with me every single day. I know he is proud of me. I feel like we are both in this together. And that makes everything okay.