I have been so excited to share about this precious girl. Emma is a ROCKSTAR! She’s beautiful and has such tenacity. Her Mother, Katie, was so kind to share Emma’s story and some amazing pictures for all of us. This precious girl is the reason the RRP Foundation raised over $5000 in record speed this early fall. For a rare disease, that’s an amazing feat and Emma is the reason! She started the campaign! Here’s Emma’s story, as told by her beautiful and brave Mom, Katie.
My beautiful daughter Emma was diagnosed with RRP at the age of 5½. She very suddenly became hoarse and we could not get her voice cleared up. Her family doctor kept insisting that I just needed to give the steroid he had prescribed more time to work, but after 3 weeks and her voice only getting worse, I knew in my heart something was not right. I started to research hoarseness in children online. I found that one of the most common causes of persistent hoarseness in children is RRP. I knew right away that that was exactly what my daughter had. I had just been diagnosed with cervical HPV causing cervical dysplasia about 1½ years after Emma’s birth, so I knew my suspicions were most likely correct.
I took it upon myself to set up an appointment with a pediatric ENT for my daughter. I told him of my own HPV history and told him that I was positive my daughter had RRP. He passed a scope down her nose that same day and confirmed that Emma had something growing on her vocal cords. He said that she would have to have surgery so that he could get a better look and biopsy the area. My heart sank because I already knew.
It was confirmed that Emma had RRP on October 20th, 2011. This is easily the worst day of my life. The doctor proceeded to confirm the diagnosis in a public waiting room where I completely fell to my knees and could not be consoled. I was led out of the waiting room by my Mom and Husband to a bathroom where I collapsed to the floor and cried. After several minutes of uncontrollable crying, I pulled it together because I promised my little girl I would be there when she woke up.
Today, Emma is 8 years old and she has had 10 surgeries. Her vocal quality is much better than it was after her first two surgeries, but it is still a struggle for her just to speak and endure the many surgeries she must undergo. Since her first doctor knew so very little about RRP (like most doctors who have never even heard of the disease) we were forced to seek out a doctor that was more knowledgeable about RRP. After a few disappointing “second opinion” visits, I finally decided to contact one of the most knowledgeable experts on RRP in the US, Dr. Zeitels in Boston. I was concerned about the distance we would have to travel and the financial burden it would ensue in order to get her quality care, but I was willing to do whatever it took to get my daughter the best care possible. When I called, they were very supportive and told me they understood my frustration of trying to find a doctor that could help my daughter. They said there was actually a doctor a little closer to where we live in Ohio by the name of Dr. De Alarcon. He had worked with Dr. Zeitels and followed very similar protocols. When we met with Dr. De Alarcon we were overcome with relief to finally be in the hands of a surgeon who knew how to treat our daughter’s rare disease and still manage to give her the best vocal quality possible. He has performed 8 of her 10 surgeries and has given her quality of life back, which is one of the greatest gifts ever. I don’t know if my daughter would even have a voice at all if it weren’t for him. He is certainly my hero.
Even though we have finally found the right surgeon for our daughter, the burden we feel from this awful disease inevitably persists. Traveling every 8 weeks to Cincinnati Children’s Hospital in Ohio has been physically, emotional and financially burdensome. It is roughly a 4 hour drive one way for us. Sometimes we have to leave as early as 2:00 AM to be there for our surgery times. It doesn’t help that they are in a different time zone than us. Then, by the time surgery is over, we are so emotionally drained, that the 4 hour drive back is a fight to stay awake and make the drive. We have stayed at a hotel for one of the surgeries, but then you have the added cost of the hotel. As it is, we have to pay $4500.00 out of pocket each year before our out of pocket expense is met for insurance to start paying 100% of the medical costs. This is roughly the same amount of money I see many of my friends using yearly to take a nice family vacation. Emma would love to go to Disney World, but instead, our money has to go to paying her medical expenses. We pray and hope that we can eventually save enough extra money to get her there before she is too old to enjoy the innocent magic this childhood favorite has to offer.
Emotionally speaking, this disease has certainly challenged us on many different levels. When Emma was first diagnosed, the guilt I felt was overwhelming. I did not know how I could ever forgive myself and learn to live again. My grief was so dark and I was so unreachable. I often found myself wanting to fast forward my life to see how all of this turns out for her. I thank God for my wonderful Husband and supportive family who never gave up on me in my darkest moments. I endured extreme grief and depression for almost 2 long years before finally finding an antidepressant that helped me cope. I thought about suicide often, but knowing my daughter needed me was what pulled me through. She needs me to be there for her through this lifelong journey she now must endure with this awful disease. I will continue to pray for her, for a cure, for everyone affected by this awful disease daily, and will fight to get her the best treatment possible until the day I take my last breathe.
As for Emma, she never fails to amaze me with her strength and amazing courage. She is such a fighter. She is determined to make a difference! She has made her very own challenge in response to the ALS ice bucket challenge. She has challenged 1 million people to donate $1 to the RRP Foundation to help fund research for a cure. Her thinking is quite simple, if 1 million people donate just $1, a large amount of money can be raised without placing financial burden on any one person. I think it’s a beautiful concept and great goal for her to work towards. (Her challenge can be found on Facebook at https://www.facebook.com/Challengerrpdonation )
This is not to say that Emma has not struggled despite her astounding strength. She is always very nervous for her surgeries. She says she is scared she won’t wake up from the surgery. Hearing this breaks my heart. When she does wake up, she is in so much pain and then must be uncomfortable the whole 4 hour drive home. She can’t talk for at least 5 days after surgery, which is very hard especially when she has to go back to school. She is constantly asked by people what’s wrong with her voice, if she has a cold. She used to tell people about her disease, but she was tired of the funny looks she got from trying to explain. Now she just tells people that’s just her voice, how God made her. Just recently, she has been getting made fun of by a few kids a school. Thank goodness she has some really good friends that stick up for her.
In all that we have been able to tell Emma about her disease, we have not told her that the disease could one day take her life if it spreads to her lungs. As she gets older and will soon be using the internet, I know this is something she is eventually going to find out. It’s a worry you never want your child to have. Although spread to the lungs is rare, it is something we must never let stray too far from our minds. Staying up on her medical care is critical. We will continue to strive to give our daughter the best medical care possible regardless of the price tag. We just keep holding on to hope that a cure will be found. In the meantime, we take it one day at a time.
In the last 3 years since Emma’s diagnosis we have found grace in the darkness. We have learned to live a “new” reality, to take advantage of every good, surgery free day. While we wait for a cure, we will continue to give Emma the best life possible between surgeries and love her and support her in every dream she has.
To close, I am going to ask that we all share this, press this, do whatever we can to help Emma reach her goal. She has shown so many of us the power of one….thanks again to Emma’s Mom for sharing her heart and Emma’s story.