by Kristina Vanderpool (Wilsonj)
Hi! My name is Kristina Vanderpool. I have a 19 month old little girl that has RRP. She was diagnosed with RRP when she was 8 months old.
I wanted to write a short piece and let everyone know first how important this website is to me. Most importantly though, I want
My little Morgan was born on December 16, 1997. She always seemed to be rather quiet when she was just an infant. Her grandfather nicknamed her “squeaky” because the only sounds she made resembled that of a mouse squeaking. When she cried you heard nothing. I kept asking her doctor why she was not loud when she cried and why was she so hoarse sounding. He told me time and time again that I should count it as a blessing that she was so quiet because one day she would develop a set of lungs that would make me crazy. Well, to make a long story short he was wrong. I had been taking her back and forth to the doctor because I thought she was sick. They kept treating her for bronchitis. I took her to the doctor yet again. Her regular pediatrician happened to be out of the office and she got to see a new doctor. At first they began giving her breathing treatments which were not helping. Then the doctor paid attention to her crying and asked me how long she had sounded that way. I explained it to her and she said that it wasn't normal and something was wrong. She admitted Morgan to the hospital because her oxygen levels were in between 89 -92%. They did a CT scan on her that night and I found out the following day that Morgan had RRP when they did a laryngoscopy on her.
My first feelings when I found out what she had were scary. I felt a tremendous amount of guilt, hate, and I was completely scared. I don't think I had ever cried so much in my entire life.
I felt guilty because I had given my daughter this horrible disease. I felt that it wasn't fair that my daughter should have to pay for my mistakes. Everytime I hear Morgan try to cry it breaks my heart. It looks painful, but I don't know that because she can't tell me yet how she feels. I wonder often if she will be teased when she goes to school because her voice is not normal. I felt hatred towards myself because my daughter has to suffer because I was stupid. I felt anger towards my OB/GYN because he told me there was no risk to my unborn child. I thought how could God be so cruel and do this to my baby. A lot of my feelings have changed, but not completely. I still feel guilty from time to time.
Morgan has had eight surgeries to date. At first they were ranging anywhere from every 2 to 3 months. Now her surgeries have gotten a lot closer. She goes every 2 to 3 weeks now. Her doctor put her on Acyclovir at first. Acyclovir really has no effect on RRP. She has been taking Indolplex sprinkles for a little over a month now. Just the other day she had to have emergency surgery because she was having such a hard time breathing. They then decided to try Cidofovir on her. I am keeping my fingers crossed and praying that this will give my baby some relief from the surgeries. [Ed: It didn’t.]
Morgan's otolaryngologist gave me a copy of the RRPF newsletter and that is how I eventually found RRP ISA (a different organization) and this website. Had my doctor not given me a copy of the newsletter I don't know where I would be today. I would probably still feel the way I did the first day I found out Morgan had RRP. I would feel alone without anywhere to go.
I now consider myself to be what one would call an “RRP Activist”. Getting involved with letting others know what RRP is and letting them know that there is a place that they can go where there are others just like them has helped me. It has helped me to concentrate on other things instead of letting myself get so absorbed in the depression this disease has brought on. It feels good to know that by sending a simple letter along with a copy of the RRP Website homepage that maybe a doctor will read it and give the information to his patients. Kind of like showing the lost souls that there is a place that they will not feel so lost. They can actually read about this disease and gain as much knowledge as possible. They can meet people who are in the same shoes as they are. It helps to be able to ask others questions that may have a little more experience or has dealt with this disease longer than you have. People encourage you that know what you are going through.
I have gotten involved some with RRP ISA's message board. I try to answer some of the questions that I can. Some of them I can’t answer. You can bet that a lot of the answers are right here on the website if you read enough and dig deep enough it. It helps to give someone an encouraging word or two or just by giving them your support.
This disease has affected my life in more ways than I could have ever imagined. Just sitting there and doing absolutely nothing though is not helping yourself or your child get any better. NOTHING is not going to be the cure that we all want so badly for this dreadful disease that we all call RRP.
For all of you out there that want what I want do something about it. Don’t just sit there and feel sorry for yourself. Get involved with the cause!!