The following is an interview I had with Melissa Kyle of Kentucky. Her daughter Katlin (pictured below) was diagnosed with Familial Spastic Paraparesis (FSP), sometimes called Hereditary Spastic Paraparesis, a rare chromosomal disorder.
1. Tell me about yourself, your family, and your daughter Katlin.
“My name is Melissa Kyle. I have been married for 17 years, and have four wonderful and very outgoing girls. Kayla is fifteen, Kelsey is thirteen, Katlin is eight, and Kerrigan is six.
My college degree is in Early Childhood Development, and I have worked in the childcare profession for over ten years. Due to an auto accident in the summer 2004, I can no longer do the work I love because of a back injury. Prior to that, I worked with children of all ages, from infants to teenagers. I miss my work very much!
My daughter Katlin is facing her third surgery this summer. This procedure will be done to correct a previous surgery on her feet. She has Familial Spastic Paraparesis (FSP). FSP is a rare chromosome disorder that affects the lower limbs. It causes stiffness, and increases tone in the legs. This condition is progressive.”
2. When did you first realize that something might be wrong with Katlin?
“As soon as she began walking. She was around 9 or 10 months old, and she started falling a lot. I also noticed that she was walking on her toes. When I took her to the doctor, I was told this was normal. But deep down, I knew something wasn’t right. Finally when Katlin was 18 months old, she was examined by a physical therapist. The physical therapist said she was amazed Katlin was walking at all. Not only was Katlin stepping on her toes, but her gait was off. Her lower back was curved in, and her leg muscles were extremely tight. Doctors kept asking me, “How did she ever learn to walk?” I just told them that she has three sisters that keep her busy. Katlin’s therapy has been ongoing for six years now.”
3. What did it take to get an actual diagnosis? And how did you feel about it?
“Getting a diagnosis was tough. After many doctor visits and medical tests, we met Dr. Dietzen, a true godsend. He really cared for us and listened to all of my concerns. He referred us to some out-of-state specialists who diagnosed Katlin with Familial Spastic Paraparesis (FSP).
We felt every emotion you could think of: Relief, because we finally had the answer. Denial, because it didn’t seem real. Anxiety, because we didn’t know how we were going to handle it. Fear, because we worried about what would happen to our daughter. Guilt, because we wondered what we did to cause it. Depression, because our hopes and dreams felt lost forever. And anger, because it seemed so unfair. Finally, we came to acceptance: ‘I don’t like it, I don’t understand it, but I can handle this.’
I still find myself going through some of these stages when new things come up. But I know that I can always depend on God for comfort.”
4. What is the most difficult part of dealing with your daughter’s condition?
“The most difficult part for me is that this disease is progressive. Some days Katlin seems so strong and ready to take on the world. Other days she spends lying on the couch. It varies. Now we are facing Katlin’s third surgery to correct her feet. Our goal is to keep her walking as long as we can. She does use her wheelchair for long distances and for bad days.”
5. How does Katlin manage her schooling and daily activities?
“She does quite well. She has a lot of determination; after all, she has three sisters that she wants to keep up with. She likes to try new things. She has just started playing T-ball, and is doing very well I might say. She is preparing for a ballet recital in June. It is great to see Katlin doing the things she wants to do.”
6. How do other children treat your daughter?
“Katlin has a great group of friends, and a best friend, Abby. Her friends are very helpful. They all want to push her in her wheelchair. Or they want to carry her things if she’s using her arm crutches. Sometimes when we go out people will stare, but that doesn’t seem to bother her. I and my other daughters have learned to just approach kids and adults and start talking to them. People are not mean; they just want to understand. They seem to be drawn to Katlin’s arm crutches since few people use them.
Overall, I believe that Katlin feels accepted by others.”
7. Are there any medications which have proven helpful? What therapies have been the most successful?
“Medication has its place. Katlin uses some to try to help with her spastic legs. But she also needs a certain amount of stiffness to move and to walk. One of the best treatments we have found is called Hippo therapy. It is physical therapy on horseback. (After all, we live in Kentucky.) There is something very positive about Katlin riding a horse. She feels free and relaxed. She has been riding horses since she was three.”
8. What advice would you give to other parents who may have a child diagnosed with a similar disability?
“My advice is to remember that as the parent, you are the expert on your child. You know your child better that anyone. Doctors only know so much. Believe in yourself. Put your faith in God and he will carry you through anything.”
Best Wishes! Melissa Kyle
If you are the parent of a special needs child and would like to share your inspiring story, please email me at kriscrow@qwest.net.