The Smiley Morning Show meets our Smiling Emily

If you are in the Indy area you have likely heard about the Make-A-Wish Request-A-Thon that has been put on by 99.5 WZPL for the past 20 years. For 36 hours straight the Smiley Morning Show broadcasts until they have met their fundraising goal. Last year they raised $624,072 which equated to 78 wishes granted.

If you have ever listened to the request-a-thon with a dry eye you are a better person than I am. I always choked up at the Make-A-Wish stories that used to be on Sportscenter. I had the honor of being involved in some fundraising tied to the request-a-thon before Emily was born. I could’ve never imagined that one day we would be one of the families granted a wish.

On Thursday December 1st between 11am and noon we will be live on the air during the 20th anniversary request-a-thon. While Emily has already been granted her wish, we were asked to participate. We have been a part of a few radiothons for Riley Childrens Foundation and are always happy to help out an organization we care about so much. This appearance on behalf of the Make-A-Wish foundation will be our first, but hopefully not our last. They do amazing things on behalf of those in the most need. If you want to listen in, donate or just get more details on the request-a-thon head to http://oki.wish.org/ways-to-help/fundraising/request-a-thon

They asked us to fill out a questionnaire prior to the broadcast. After filling it out I realized it would make a great post. If you want to learn more about Emily or her wish read on…….


Please explain in detail why you are choosing your wish. In other words, when you can wish for anything, why did you specifically choose your wish?

What 3-year-old girl doesn’t love all things Disney? Emily started out infatuated with Minnie Mouse. Then, during inpatient stays at Riley Hospital, she would watch Frozen on loop. She couldn’t say many words at the time, but she could sure sing the word “Go” during Let It Go. She watched it so many times that she started to do the same mannerisms as Elsa when she sang. The opportunities that Make A Wish provides with behind the scenes access to princesses and events at Disney will be something Emily will never forget.


How has/will the wish impact you and your family? 

Our family hasn’t been on a true family vacation since Emily was born. We have only been able to leave the area as a family to visit family a couple of times. One of those times she ended up having a week long inpatient stay 5 hours from home. The only other trips we have been on are when Emily, Liz and I went for two different medical consultations with specialists. We try to make the most of them and turn them into mini vacations, but between numerous doctors appointments and not having our boys with us its not the same. Being able to get away from as much of our day to day as possible as a family will be a welcome change. It will be especially welcome for Elizabeth. I get to go to work during the day and have that as a distraction. She has to deal with doctors and insurance companies and hospitals all while taking care of Emily and doing other things our family needs. To be away from all of that while knowing good medical care is nearby should we need it is hard to put into words what it will mean. Also for our boys to be able to come and be included is a big deal. They sacrifice quite a bit having a medically complex sister. They are great kids and don’t complain about not getting to do some of the things and go some of the places their friends do, but to let them have some time away is a huge bonus.


What do you want to be when you grow up and why?

Even though she can’t eat anything Emily loves to play kitchen. From pretending to cook food, to even sitting at the table with us and playing with real food she wants to stay connected to food. We joke that wouldn’t it be fitting if she became a cook one day even though she can’t eat. She also takes a huge interest in her medical care. When she is inpatient she wants to help the nurses do her vitals. She is always asking about medicines we give her or wanting to play with some of her medical supplies. If she became a nurse it wouldn’t surprise us one bit.


What is your/your child’s favorite hobby and why?

Emily loves to dance. Whether she hears music in the background and starts to bop around or full on dance parties in the living room when we turn up Pandora she is all about dancing. Lately she has been trying to do ballet. We think she saw it on a cartoon, but she is mimicking a ballerina with the correct stance and tip toes.

Her other favorite hobby is art. She would paint everyday if we let her. She regularly uses colored pencils, crayons or chalk on our chalkboard painted door to paint pictures of her family. When she is inpatient one of her favorite activities is to put a sheet on the bed and get out the paint. Its great for motor skills and it really helps her not think about being in the hospital.


Please describe the circumstances around when you/your child first became ill.

From the moment she was born 7 weeks early she had issues. Most of those were chalked up to her prematurity. After 10 weeks, numerous developmental pediatric appointments, missed milestones and slow growth we insisted on more testing. The tests showed a level of glutaric acid in her system ten times the normal level. This led to a diagnosis of glutaric aciduria type 1. Dietary changes led to improved motor skills, and other improvements. All the while she kept having inpatient stays. She would get admitted with what they called GI system shutdowns for 5 or so days at a time every month. It was almost like clockwork. She wasn’t old enough to tell us what was wrong, we wouldn’t know there was a problem until she started throwing up. Then at roughly 16 months we were in the ER at Riley. Emily was finally old enough to show us where the pain was. Luckily we had an adult doctor filling in from University Hospital because the ER was so busy. Based on her symptoms, her history and where she was saying the pain was coming from the doctor ran tests for pancreatitis. We had no idea they were testing for that, let alone how our young daughter could get a disease we only knew as one that alcoholics could get. The pediatric specialists at Riley couldn’t believe it either. They re-ran the tests and came in during the middle of the night once we were admitted to tell us the news, Emily had acute pancreatitis. In the months since we have had further genetic testing that has dismissed the glutaric aciduria type 1 diagnosis. Testing is still inconclusive on why her levels of glutaric acid were so elevated. We have been to numerous specialists and had whole exome sequencing done (evaluated her DNA against all known gene defects) but still have no answer for what is causing her now chronic pancreatitis. She is on a daily regimen of strong pain medication that is needed to keep her from being in constant debilitating pain. She is currently undergoing consultation in Cincinnati for a total pancreatectomy and auto islet transplant. If approved they will be removing her pancreas, re-routing her insides and taking the insulin producing cells from the pancreas and transplanting them into the liver in the hopes that the cells will regenerate and work within the liver to produce insulin, keeping her from becoming type 1 diabetic.


Please explain how your/your child’s illness has impacted you/your family.

Emily, not her illness, has completely changed our life. Her bravery through debilitating pain that adults have described as willing to do literally anything to stop it has given us a new perspective on life. We were a grounded family before, but being around Riley Hospital and seeing what others are going through humbles you. When you think how can our family keep dealing with the curveballs and constant issues, then see someone else struggling much worse it puts a lot into perspective.

Our entire daily routine has changed and revolves around Emily’s medical needs. But after a while you get used to it. People ask us all the time how we deal with it and the truth is you don’t think about it in the moment. You just do what needs to be done. While we would do anything to take away her pain and the suffering she has had to do endure at such a young age, Emily being a part of our family has changed us all for the better. You would rather your child not have to go through what she has just to help your family gain perspective and be changed for the better, but at least there are many positives that have come from her fight. It would be sad if she went through this with nothing to show for it but pain and suffering. Instead she has impacted so many lives and truly made our corner of this big world a better place.

A doctor once “This will not define her” and we try to live by that out every day.


Tell us something unique about you/your child or family. What are you most proud of?

Emily was awarded the key to the city of Defuniak Springs, FL. She also had a day declared as Emily Theisen Day in the same city. It came about because the founder of The Pancreatitis Foundation, a local man named Mark Light, rode his bicycle across the country to raise awareness about pancreatitis but ultimately as a fundraiser for Emily’s pancreatectomy surgery. My (Chris) uncle lives in Defuniak Springs and in a completely small world circumstance that was one of the daily stopping points on Marks cross country journey. The city took to her story and rolled out the red carpet for Mark as well. You can learn more about the story through the hashtag #EmmeSmiles or by visiting www.emmesmiles.com

That also leads to what we are most proud of. Through everything she has been through in her short lifetime Emily always is smiling. So many people comment on how she doesn’t seem sick and how she is always happy. Even while inpatient she tries hard to stay positive, always giving a thumbs up with a smile. Many times she has been the one to comfort us as parents, when its usually the other way around.

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