Gina,

My name is Megan Nuffer, I am the one that sat behind you at the concert, Melissa and I. I am so happy you gave me your card because I wanted to express my gratitude to you. We saw you and your husband at the Tim McGraw concert and we left that concert not talking about the concert but about you and your husband. We talked about the kindness you had, determination and generosity. At the time, we thought you were with your family (the people to the right. There were two older women that couldn’t stand long) and you were determined to get the people in front of them to show some respect and sit down so they could enjoy the concert as well. We now know that those people weren’t part of your family, you are just that caring for others that you want to take care of everyone and want to make sure they are happy. The second you got to the concert we both looked at each other and said “there’s that sweet lady again” and then you started talking to me. You are such a sweetheart. You really opened my eyes to showing kindness to strangers. By all means I am not mean to strangers but I don’t go out of my way to be super nice like you are. Usually a trust issue. You helped me realize that showing kindness by making sure people are enjoying the concert and can see, stuff like that, is nothing that will hurt. I want to thank you for that.

When we got home last night I was so intrigued to know who you were. I read everything you have put online. This is what I want to thank you for as well. To see a couple that have been through so much stress, so much pain, and so much unexpected… You two showed so much love for each other at the concert. The way you guys touched each other, looked at each other, smiled at each other, it was just beautiful. I cannot even imagine your life on a daily basis. But to see that you guys still look at each other with so much love just brightens my day.

I looked into your network and watched your videos. It brought tears to my eyes to see your children cry and be in so much pain. I cannot imagine having to experience this on a regular basis. I have a little sister who is my best friend in the world. She has a rare disease call HME (hereditary multiple exostoses). It is a condition in which people develop multiple benign bone tumors. My sister (Katie) has 101 bone tumors. She has had 3 different surgeries, getting a total of 15 of them removed. Lucky for us, Shriners Hospital does these surgeries for free, because someone like you created this hospital for research and to help treat children, regardless of their parent’s financial position. I don’t know what we would do without this hospital because without their free surgeries, my mom would be drowning in debt or my sister could possibly be deformed or even dead. These tumors are not dangerous, unless they get too close to the heart or into the brain. They do cause a lot of pain when they first start, so she is often in pain which some days disable her.

My sister is one of the happiest, most generous, and hard working 17 year old girl I know. She is such an example to me. Her personality and happiness brightens the room every where she goes. She wants to live as much as a normal life as possible. She used to be in dance and had to stop that due to the pain and her not being able to lift her arms straight up. She cannot run in gym class which has even led to her getting made fun of. She works many hours at Sizzler every week so she can earn the money to have fun with friends and buy things that she wants like a car to get to work and school. I started working there as a second job so I could hang out with her since she was working all the time at night. Every time I would work with her, she would try so hard to hide her pain but since I knew her and could read her, I knew she was suffering. One day she had worked for 5 hours and still had another 5 hours ahead of her. She was bawling due the pain she was in. I went and told her she needed to leave. She said she couldn’t because no one could cover her shift. I went back and talked to the boss and said that I would work late and make it work but they needed to send her home. I told them the seriousness about her disease and they ended up letting her leave. When I told her to go home she said no, that she will push through this like she does every other day. She finally ended up leaving because she couldn’t stand any longer. This is just one of the many times my sister has impressed me by her strength. Although 90% of the time my sister is the most happy, adorable person you will know, she does break down. She texts me saying stuff like “why does God do this to me? Why can’t I just have a normal life? Why do I have to be in so much pain?” it breaks my heart to see my sister in pain and me not be able to do anything to help. I would give my life if it would allow my sister to not go through any more pain. While there is not a cure for this disease, hopefully she will stop growing the tumors when she is done growing so only a few more years.

I can’t even imagine having 3 children go through pain on a regular basis. You are so strong and so inspiring. It breaks my heart knowing children have to go through stuff like this. The fact they can’t have a “normal” life. The fact they can’t go outside and play whenever they want and do the things they want to do. It’s not fair. But to have someone like you so dedicated to raising money and have a network to help kids like this and to give them hope is just heartwarming.

Now that I have wrote a novel, I will let you go. I really just wanted to tell you thank you. You have a great network and I will definitely join it and spread awareness. I don’t even know you but you have changed my life and truly inspired me in many ways. You and your husband have such great energy. We definitely need more people like you two in the world.

I pray to God that you find a cure for your children and find a doctor that is committed to them as much as you are.

Sincerely,

Megan

Contact information:

Megan Nuffer

(801) 856-0184

megan.nuffer@hotmail.com

 

Katie Nuffer:

(801) 503-4975

katmandumoomoo@gmail.com