Patient Stories

katie thompson

Our little girl Katie was diagnosed with RRP in February 2011 at age 6.

Ever since she began talking her voice was somewhat raspy. She talked clear but every now and then it was a little raspy sounding. Whenever we would ask about her voice, we were told “she just has a very unique voice” and it’s so cute.  With that we thought ok, nothing to worry about then.  As time went on it seemed that the raspiness was becoming more prominent and I began searching raspy voice/hoarseness in children. I came across vocal nodules, so at my older daughters physical I asked their Dr. again about Katie’s voice. She said yes, it could be nodules and she needs to be seen by an ENT sometimes voice or singing lessons can help. So a few weeks later just after her 6th birthday we had seen the ENT. During that appointment he had her make a few sounds and did a laryngoscopy. Once he was done, we were given the horrible news – our little girl has RRP! We had never heard of this before and as any mother I began crying and my stomach was in knots. Katie and my older daughter were looking at me like what is wrong? So I had to pull it together, take a deep breath and listen to what was the next step. We were told she would need surgery in 6 weeks to remove the virus. My question was and still today, “How did she get this?” Because given the information on RRP, nothing measures up in Katie’s case – 1. She is not my 1st born child, 2. I was in my mid/late 20’s when I had her, 3. I’ve never tested positive to HPV & my OBGYN doesn’t feel I passed this on to her, 4.Vaginal birth, that is Yes.

It’s been frustrating as her mother, because everything points to me as passing on the disease. It’s also given that those with RRP, have a compromised immune system. So I had extensive blood work done to see if that was a link to Katie getting this disease, but everything came back normal. What the Immunologist did highly recommend is that having the disease and HPV, she receives the Gardasil vaccine and we have done that!


I’ve looked more into the HPV virus and it’s estimated that 80% of the population have it and don’t even know, men and woman.

There are no signs or symptoms, and the disease can lie dormant for 10+ years.  So I have to realize, that I have it or had it and it doesn’t matter how I got it or who gave it to me!

As her Dr. states, It doesn’t matter how she got the disease, what is important is that she is treated!

Today Katie is 8 ½ years old, and will be having her 15th Surgery in a couple weeks! We began at 6 week intervals and have worked our way up to 12 -13 weeks! She also takes her “orange sprinkles” Photosorb DIM daily to help slow the growths.

All of her surgeries have involved the most sensitive area of her vocal cords (anterior commissure).  Should we of known of this disease much sooner, I think it wouldn’t be as bad.  But she is doing well; she can talk after surgery without any problems, just soreness for a few days. Soon after she has her voice back loud and clear!!!

Katie is our very strong willed, feisty child, she usually doesn’t let much get in her way, but she has her moments. We can only hope and pray that someday she will go into remission.

As a therapy in dealing with RRP, she takes karate to help boost her confidence, self-esteem, self-discipline, and respect. It has helped greatly but still she will have a day here and there that she does get upset. For example, we had gone to Great America and the daredevil she is, she was excited to ride the roller coasters. Afterwards I seen she was sad, I asked what was wrong, and she replied “I just wanted to scream like everyone else, but it wouldn’t come out”!!!  She said “mom, having this disease I can’t scream.”

I was lost for words and just wanted to cry. Something that many people think is no big deal, Meant Everything for my little girl!!

We just keep hoping that a cure is found and the stress can be lifted.”

—Jill Thompson, mother of RRP patient Katie Thompson

Breaking News!!!

RRPF President, Kim McClellan to speak at the White House Rare Disease Forum

Tonight! February 28th @ 5:30PM EST