Hi! My name is Braden… I am seven years old, and I have a pretty cool story if you’d like to read about me!
I was born in March of 2005, and even before I was born, my parent’s knew that I had so many tough things ahead of me. I was born with Spina Bifida, as well as Hydrocephalus and an Arnold Chiari II malformation. In other words, things were really complicated from the start! On top of all that, the doctor’s told my Mom and Dad that I probably wouldn’t even survive birth, and even if I did that I would have very little use of my lower body, and I’d have very little cognitive ability.
Boy were they wrong! I like proving the docs wrong whenever I can, and I have had many chances to do just that. In fact, I was so strong the day I was born, that I had my very first surgery when I was only a few hours old! Then my second one the very next day! Even though I am only seven years old, I have already had fifteen surgeries. They have worked on so many parts of my body, that my Mom and Dad call me Superman, because I am a boy of steel!
Ever since the day I was born, I have been a Riley Kid. That means that Riley Hospital is very special to me and my family, because I spend so much time there. All of my surgeries except one has been there, and I am usually there at least twice a week for therapy. As a matter of fact, I spend so much time there that I have made more friends than you could imagine! It’s not just the doctors I like so much, but the nurses, Child Life specialists, receptionists, and even the people that help keep Riley clean! One of my favorite things to do whenever I am at Riley is to visit the Safety Store… I was even the very first kid to be in the Safety Store after they remodeled it! I also love when I am wheeling through the halls and I see so many people I know, and I have to say hi to every one of them! It makes it hard to get to my appointments some times.
I love the new tower in the hospital, but one of the last surgeries I had to stay there for 37 days! Of course, my Mom and Dad tell me it’s not so fun being at Riley so long, but I didn’t want to go home at all! I like staying there because I have so many visitors, and I get room service!
When I’m not at Riley, I still love to do anything I can that is for Riley! One of my very favorite things is to go to Dance Marathons! Dance Marathons are great big parties to raise money for Riley Hospital. They have them at colleges and high schools! My very first one, and most favorite, was at Ball State University. I had so much fun that night, and I will never forget it! My parent’s came with me to share our Riley story, and they planned on only staying for a little bit, not the whole 12 hour marathon. But, as usual, I had other ideas! I had a blast with all the college kids playing with me, and my team (the orange one) gave me a great big bag of goodies, and followed me around all night! I never got tired, even near the end which was at 3:00 the next morning! They had a rave at the end where they turned off the lights, passed out glow sticks, and turned up the music really loud… IT WAS FUN!!! I didn’t want to leave at the end when they announced the total of how much they raised for Riley, but my Mom and Dad made me! When I went back to my kindergarten class at school on Monday, I loved telling my teacher about all my new college friends, and the college rave I went to… she kind of looked at me funny when I said that!
Since my first one, I have been to lots of Dance Marathons. They have them all over the place. I have been to Dance Marathons at Ball State, Butler, Purdue, Indiana University, UIndy, IUPUI, Indiana State, St. Mary’s, and one of my other favorites, Franklin Community High School with my buddy Evan! In fact, I like Dance Marathons so much and we go to so many, that my Mom and Dad like to tell people that Dance Marathon is my sport!
During my last stay at Riley, my Mom brought in a beach ball for me to play with. I had so much fun hitting it all over the room, and it didn’t hurt anything! I would play with anyone who would hit the ball with me. It was so much fun, my Dad went to the store and got me a few more, so I could have lots of them in my room to play with. I would even have the doctors and nurses playing with me when they were supposed to be working! I would throw the ball at them when they came in the room, and I even tried to throw it at them when they went by my room in the hallway!
I had so much fun with my beach balls! One day, I saw one of the other patients on my unit that would pass by my room all the time, and sometimes she would stop and chat with me. I told my Mom that I wanted to give her one of my beach balls. The nurses were able to clean the ball and give it to her, so she could have fun too! I like doing that so much that I wanted to give one to the little boy in the room next to mine too. Then, I made my dad go to the store and buy lots more beach balls to give to the other kids on my unit at Riley!
When I finally got home after my surgery, we had a big party at my house. I invited everyone that came to visit me when I was in the hospital… but I told them they had to bring me beach balls so I could donate them to Riley Hospital for all the other kids! I wasn’t sure if it would work, but it did and we gathered up almost 150 beach balls for Riley! I had so much fun doing that, that I told my Mom and Dad I wanted to do it again and again, so they are helping me get more beach balls to donate. I can’t wait!!!
Geo Myers
October 28th – Makenna and Maison Gibson
October 21st – Diana Overman
Diana has been going to riley since she was 6 months old. She has had eye straightening surgery, tendons tightened and lengthened, and numerous neurosurgeries. 21 surgeries in all at Riley. Her only seizure was at Riley. She spent 7.5 weeks straight at Riley 5 years ago, after having spent most of October in Lutheran Hospital. She event spent Christmas at Riley, and Santa was able to find her.
Diana will be named a 2014 Riley champion the weekend of PUDM. She wants to use her title to show other girls that have a disability that a wheelchair will not slow her down. She was thyroid cancer and has been battle it for 4 years. She is being seen at Cincinnati Children’s. She has Cerebral Palsy and left sided weakness. Diana was the first child under 10 to get a 4th treatment there too. We do not know what the future holds, but for now we celebrate today and our family being together.
Diana was a 28 weeks, 3 pound 2 ounce preemie and has had 45 surgeries in all at riley and Lutheran combined.
October 14th – Isabella Cruz
Isabella was born with End-Stage Renal Disease due to renal dysplasia. While her mom was pregnant with her, it appeared she did not have any kidneys at all and doctors said she would only live for a few minutes. She is a miracle baby and has beaten all odds. She made it until she was 4 years old without dialysis! On June 12, 2013 I, her mother, was able to donate my kidney to Isabella. It was a scary but miraculous day and she is now thriving! We love living back in Indiana and are so thankful we made the decisions to transfer her care to Riley.
Not even 2 weeks after her operation, Isabella went home and was playing, running and having fun like nothing ever happened. And the best part is for the first time in her life, she has normal kidney function!
Riley saved Isabella from dialysis and ultimately saved her life. Her quality of life will be so much better now and she can develop and grow as a normal child would. Thank you for all the time and work that you put in. It can never be said enough but who knows where our family would be without Riley and so thank you for spending your time raising money for the hospital that helped our little girl.
October 7th- Hannah Fulford
Hi! My name is Hannah Fulford, and I am from Zionsville, Indiana! I go to Pleasantview Elementary, and I am a congenital heart defect survivor. I was born in 2004, with four holes in my heart. I had two atrial septal defects and two ventricular septal defects. My breathing was very labored and my heart was enlarged. Because of the holes in my heart, my heart had to work very hard. I was very thin, and I required a feeding tube because I had to eat every four hours-twenty four hours a day. I was in heart was in congestive heart failure, and I was diagnosed as failure to thrive and I had Hypotonia (low muscle tone). When I was three months old, I was admitted into Riley Hospital and had open heart surgery.
I go back to Riley yearly for checkups, and I will require more surgery in the future, but I am not worried because the doctors there are great, and thanks to you, and the money your raise advances are made every day! Now I play lacrosse and sing with the Indianapolis Children’s Choir!
September 30th – Leigha Scott
Leigha was always healthy. Never had the flu, just a minor cold here and there since birth. She was always full of energy!
On March 23rd, 2014 Leigha woke up sick. We just thought it was the flu. Two days later, her fever was still high and she woke up with bloody, blistered lips. I took her to the ER where they diagnosed her with stomatitis, flu, and say she was dehydrated. She was given 2 antibiotics to take. The next day, she was no better. In fact she was worse, and her hearing had become slightly decreased. I took her up to the ER, once again, and demanded an IV. They said everything looked fine and told us to keep giving her the antibiotics.
The next few days her hearing was becoming more and more decreased. Her lips were not healing, and she could barely eat. I watched my vibrant, normally upbeat, little girl dwindle down to nothing.
Sunday morning, March 30th, I rushed my Leigha back to the ER for a third time. Her tear ducts were extremely scanned over, that with the touch of a wash cloth they would bleed a little. Her poor lips were so swollen and bloody…and this time…her hearing was completely gone. My baby girl’s hearing was gone. She stood there crying “mommy I can’t hear you.” I lost it and immediately rushed her to the hospital.
The ER doctor took one look at her and immediately called for an ambulance to take her to Riley. He said it looked like a definite case of Kawasaki’s Disease. A very rare condition that causes inflammation in the walls of some blood vessels in the body, and can affect the heart if not treated soon.
She was rushed and admitted to Riley Hospital in the infectious disease unit, under the care of Dr. John Christensen, director of the Ryan White Center for Infectious Disease.
She was losing weight rapidly, and was weak.
While there, Leigha had 2 spinals, 1 MRI, 2 CT Scans, 1 Echocardiogram, 1 sedated ABR, 1 non sedated ABR, steroid injections into the ears, and several blood work done.
No one had an answer. She was put in isolation for the first few days until they determined she did not have Kawasaki’s. All of her tests (besides her ABR’s that measure the brain stems response to sound) came back fine.
During her sedated ABR, the audiologist and Dr. Abideen Yekkini, ENT, came out and told us there was nothing. No response. Leigha had lost her hearing.
It was gone.
An extremely healthy child lost her hearing, and no one knows how or what caused it.
She was given steroid injections into her ears, and then placed on 5-day high dose IV steroids per request of the Neurology team.
Leigha’s team of specialist departments consisted of Infectious Disease, Pulmonary, ENT, Neurology, Dermatology, optometry, and audiology. After 8 days, Leigha was able to come home.
After a month, we noticed a small increase in her hearing in her right ear. She was fitted for hearing aids.
That worked for the right ear, but it was determined she was a candidate for the cochlear implant.
In December 2014, we met ENT Dr. Charles Yates, who after further review of tests, determined Leigha lost her hearing to Bacterial Meningitis.
She was implanted in January 2015, and activated a few weeks later in February. She is hearing like she was before! It’s amazing!
Regardless of not receiving answers for awhile, Riley Hospital got my daughter Leigha better, and healthy again…and most important…hearing again.
And for that, I thank them.
September 23rd – Andrew Kerrigan
September 16th – Sneha Dave
September 9th- Olivia Lautzenhiser
Olivia was born nine days after her due date in a small community hospital in Angola, Indiana. She only weighed five pounds two ounces even though she was a full-term (overdue!) baby.
When she was three hours old, she was taken by ambulance to a hospital in Fort Wayne, Indiana because our small hospital wasn’t equipped to take care of her. She had a collapsed lung and was having trouble breathing.
Sixteen hours after her birth, I was in a car on my way to the hospital where she was staying. My husband was already there. She was in the NICU, hooked up to monitors. She was being given antibiotics via IV and she was beautiful. She had a dimple in her chin and her right cheek. She was feisty, she kept kicking her blankets off her legs. She also had the sweetest, tiniest little cry. She sounded like a kitten.
She was finally released from Lutheran Hospital when she was eleven days old. She came home on an apnea and heart monitor. She came home and cried for the next six months. She was finally diagnosed with reflux at four months old, at which point she only weighed ten pounds. We started her on Zantac for the reflux and after two months on the medicine, she was like a new baby. But she was still behind.
She was floppy. At nine months old, when most babies are sitting up and even crawling, Olivia couldn’t even lift her head. I asked her pediatrician for an MRI. I wanted to rule out CP. The MRI came back fine. We were told she had a beautiful brain.
I kept looking because I knew something was wrong. Our doctor was great at diagnosing ear infection or strep but he wasn’t very proactive about helping me with Olivia. He kept telling me she was just delayed, that she’d catch up.
I found a syndrome when she was about ten months old. It fit so many of her symptoms. She had low muscle tone, she had a cat cry at birth, she was globally delayed. I mentioned this syndrome to her pediatrician and he told me there was no way she had this syndrome because she was too beautiful. Yes. He said that.
When Olivia was a year old, I gave up on finding a diagnosis for her delays and asked for a referral to First Steps, Indiana’s early intervention program. Olivia qualified for physical therapy, occupational therapy, speech therapy and developmental therapy.
She finally started crawling at 17 months. But at her two year check up with her regular pediatrician, I asked for a referral to Riley Hospital for Children. Olivia still wasn’t walking and I worried something was really wrong with her.
We met with Dr. Stanley, a developmental pediatrician at Riley when Olivia was two years and three months old. This doctor was amazing. She listened to me. She checked my little girl and agreed, “There is something wrong with this baby.”
When I mentioned that syndrome I’d found way back when Olivia was ten months old, Dr. Stanley said, “I doubt she has it. She doesn’t have the typical facial features. But let’s test her just to rule it out.”
Two weeks later, the results were in. Olivia has 5p- syndrome, also known as Cri du Chat. This was the syndrome I’d found and suggested to her regular pediatrician, the one that Olivia is ‘too pretty’ to have.
She’s missing part of her fifth chromosome. She’s still got low muscle tone but she does gymnastics. She amazes me every single day and I thank Dr. Stanley and Riley hospital for Children for saving my sanity. They treated me and Olivia like we mattered, like we were more than just a patient number.
I thank all of you for all that you do to raise money for this amazing organization and for making these kids feel so special each time you encounter them.
September 2nd – Brodie Welshan
August 26th – Adam Shahadey
August 19th – Mickey Deputy
When I was born I had 3 holes in my heart. When I was 9 months old, Mom and Dad and I moved from Illinois back to Indiana so I could get my heart fixed at Riley. I had surgery when I was 10 months old. The biggest hole in my heart was almost the size of a dime. When Mom and Dad came in to see me in the ICU, they uncovered me and saw that for the first time ever my toes were pink. My heart was working great!
After 5 days in the hospital I got to go home. Life was great after my heart surgery. I grew, got a brother, started school and was loving life! Then when I was 7 years old I started getting sick a lot. One day Mom took me to the doctor for an ear infection. I got my favorite pink medicine and was ready to feel better. But I didn’t feel better. I kept getting sicker over that weekend. On Monday Mom took me back to the doctor to get my ear checked again. The doctor sent us to a hospital for blood work. Then she called and said we needed to go to Riley because my blood work was not good.
In the ER at Riley they did another blood draw. I was not happy about this. I do NOT like needle sticks! A doctor came in and told us I was very sick and would have to stay at the hospital. After more tests the next day, we found out that I had leukemia. I started chemo the next day. My treatment lasted for 26 months. Over those 26 months I spent 30 nights at Riley. I had 4 bone marrow aspirations, 20 spinal taps, lots of blood transfusions and more needle sticks than anyone can count. I took over three thousand pills.
In February 2007, I took my last chemo pill ever!! In February 2012, I hit the 5-year off treatment mark, which means I am officially cured of my cancer! Thank you for dancing and raising money for Riley Hospital to help my friends and me!