Quinton Skibinski

Kris has a ton of energy and loves singing, video games, and music. He’s very busy with Unified Track and Special Olympics Basketball, and this upcoming weekend on February 23rd he is participating in the Polar Plunge. Kris has raised over $300 for the Polar Plunge, which supports the White County Special Olympics. Way to go Kris! Here is Kris’s story told by his parents:

“We decided that we wanted to have more children so knowing that having biological children would not be an option for us we decided to adopt another child.  Kristopher’s birth mother drank, smoked and did not have good nutrition during her pregnancy which caused Kristopher to be born 3 weeks premature and have several medical issues like an overall muscle weakness, vision problems and he was diagnosed with fetal alcohol syndrome.  Kristopher spent 11 days in the NICU because the doctors were afraid that he would not survive.  We had to feed him 2 to 3 ounces at a time several times a day just to keep enough food in his system to help him thrive.  We had him evaluated at 6 months old and found that he was not hitting the milestones that he should be.  They enrolled him in First Steps where he had physical, developmental, occupational and speech therapy every week.  He still has physical and developmental therapy through the school that he attends.

The first time we had him at Riley he had to see a plastic surgeon to have some surgery on one of his feet.  He needed to have this surgery so that he could get shoes on to start walking.  The next time we had him at Riley he saw a few doctors to talk about his small stature.  At 11 years old he is only 62 pounds and is as tall as an average 4th grader.  We talked with the doctors at Riley about possibly doing growth hormones.  The doctor’s spent a lot of time with us talking about what would be best for Kristopher and we came away knowing that the very informed decision we made was the right one for Kristopher.

Kristopher still struggles physically and developmentally, but has made great strides.  Several of his teachers have commented that they have never seen Kristopher have a ”bad” day.  He has a real fighting spirit and never gives up.  He can always find a way to get accomplished what he needs to get done.

Riley Hospital has been a real God send for both of our children.  We can’t thank them enough for all they have done for our family.  Because of the wonderful care and support from the doctor’s and staff at Riley Hospital our sons have been allowed to grow into the happy and healthy young men they are today. “

On April 1st, 2013, 3 year old Aidric spiked a fever that would not go away even after his mom gave him medicine. When his fever lasted for a few hours, his mom took him to Porter Hospital in Valpo. Several tests later, he was diagnosed with type 1 diabetes and was given insulin injections. After about an hour and a few injections, Aidric slipped into a diabetic coma and began experiencing organ failure. At this very moment, the flight crew for the emergency helicopter for Riley Hospital for Children was walking past Aidric’s door.

The crew was able to stabilize Aidric enough to airlift him to Riley. A pediatric genetic specialist at Riley realized that Aidric’s diabetes was caused by a rare genetic mutation that caused his body to stop making insulin until it was given a jump-start. So when he was originally given insulin at Porter Hospital, he went into shock from an insulin overdose.

Today, Aidric has an insulin pump that makes it easier for him to be active. He will be starting preschool in the fall and hopefully soccer as well! He still attends regular check ups at Riley and must stick to a very strict diet, as well as have his glucose levels checked hourly. We are so thankful to Riley Hospital for Children for everything that they have done to help Aidric!

Riley’s Riley Story:

I found out I was pregnant just a couple of weeks after 9/11. My doctor set my due date as June 6, 2002. I was worried about terrorism affecting my pregnancy. Prematurity never crossed my mind. I was told that I would be on hospital bedrest for the next 15 weeks. I had a seizure within an hour of getting to the hospital but they were able to get my blood pressure under control with medication. Two days later, my condition had worsened and I was diagnosed with HELLP Syndrome. At this point there was obvious discussion of having to deliver our baby early and I was transferred downtown to Indiana University Hospital and their OBICU department. We were hoping to make it to 32 weeks at this point, still two months shy of full term. The next day it became obvious that all of our goals were out of reach. My condition became critical as I lost function of my central nervous system, kidneys, liver and sight in one eye. The decision was made by our medical team to deliver immediately via emergency c-section to give me and our little girl the best chance at survival. At this point, it was healthier for her outside my body than inside. A doctor from Riley Hospital came to visit us and prepare us for our new reality. We were told that if she survived birth, she would have about a fifty percent chance of going home. He did, however, tell us that there was a 90% chance that she would experience a moderate to severe handicap. I was only 25 weeks and five days into my pregnancy. At 1:29AM on March 2, 2002, Riley Marie Lesh entered the world. It was not the beautiful family moment that we had envisioned. Instead, I heard the door to the operating room open and close. Rick quietly whispered that she was out. My surgery lasted another thirty minutes or so and by the time I made it to recovery, she was stable and ready for transfer to Riley. They brought her to me in an isolette and lowered it so I could see her tiny body, completely covered in wires. They told us that she weighed 26 ounces and was 13″ long. Rick went with her to Riley. She suffered some complications on the transfer. One of her lines caused her heart to beat irregularly and she lost blood flow to her leg. When Rick walked into her module, two doctors were leaning over her, trying to rub it back to life. They escorted him down to the NICU family room until they could get her stabilized again. He spent the next 24 hours switching between Riley and University Hospital, bringing me pictures and at one point, telling me that he had briefly gotten to hold her in his hands while they changed the blankets in her isolette. Finally, I was able to make the trip to Riley to see her for myself. Our first visit was much too short. I touched her tiny back for a handful of minutes before my nurse told me it was time to go back. And her body was too sensitive for us to do anything other than rest a finger on her.

We had no choice but to take each day at a time, and some days, it felt like we took each second at a time. At two weeks old, she had surgery to repair a duct in her heart that wasn’t closing on its own. That surgery saved her life. Before the surgery, she was changing ventilators every hour or so in attempt to keep her lungs from collapsing or over-inflating. She was given paralytic drugs to keep her still and let her body try to heal. The surgery was a success and she really showed her fighting spirit. She was awake just hours after the surgery, as opposed to the predictions we were given. A week after that surgery, we were allowed to hold her for the first time. The next few weeks were a roller coaster of good news and scary news. She was getting bigger and gaining weight, but struggled with bad lungs and feeding issues. It was finally decided that she would go home on oxygen and a feeding tube. There were daily lessons on parenting, as well as laughter, tears and the sadness of watching other babies go home while we waited for our turn. Even worse was watching and attempting to comfort parents whose babies didn’t get to go home. Finally after 90 days in the NICU, we were allowed to take her home. It was May 31, a week or so before her due date. A nurse had colored a Winnie the Pooh picture and hung it on her crib. It said, “Hip Hip Hooray, Riley gets to go home today.” It was amazing to walk out of the hospital and let her experience the feel of a breeze on her cheek and the sounds of cars and nature for the first time. It was snowing the day she was born and it was warm and sunny the day we took her home. We continued to visit Riley on a sometimes daily and weekly basis, until eventually we were only there monthly. We also had therapist come to the house three days a week to help her learn how to do the things that typical babies do on their own. When she was one old adjusted, she was able to discontinue her therapies. When she was 18 months old, she graduated from developmental pediatrics. We continue to go to Riley for her annual pediatric appointments. Riley is now eleven years old. She’s in the sixth grade and her prematurity is a ghost. We spent many years waiting for disabilities to surface. But instead, the prematurity just exists in our memories and at times, in our dreams. We owe her survival to our doctors and nurses at Riley, to God and to Riley herself…and honestly, a little bit to luck. Riley spends her time out of school at gymnastics practice, reading, playing with friends, wrestling with her two kittens or going to dance marathons.

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 of 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 a 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. They 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.

Lucas’ Riley Story:

In April 2013, Lucas (then 2 years olds) developed a bump on the side of his head, near his right ear and temple. After an ultrasound showing swollen lymph nodes and a round of antibiotics, a CT scan was performed at Lafayette’s IU Hospital. On Monday, April 29, 2013 the scan showed a mass growing on Lucas’s skull. Our pediatrician immediately set us up for further testing to be done the next day at Riley Hospital. Dr. Lee (our pediatric hematologist oncologist) and several great nurses called to prepare us and give us an idea of what to expect.

When we arrived at Riley, everyone was so helpful and informative. We met with Dr. Lee, who is so amazing, and a biopsy was performed that afternoon. On Friday, May 3rd, we received the diagnosis of Langerhans Cell Histiocytosis (LCH), a very rare disease where certain white blood cells grow out of control and multiply quickly. Thankfully, the prognosis was good. Lucas’s treatment plan started with chemotherapy once a week for six weeks, and then once every three weeks for a total of twelve months.

On Monday, May 6th, Lucas’s port-a-cath was implanted and he received his first Vinblastine treatment. Within a couple of weeks, the mass had gone down. By the 6th week, another CT Scan determined the mass was gone and the bone was healing.

Lucas never ceases to amaze us by his strength and joyfulness. We are so thankful for Dr. Lee, the entire pediatric Hematology Oncology team and all of Riley’s many great doctors and nurses!

Michael’s Riley Story:

Our Riley Story stared in January 2000, as Michael turned 2 months old. After being deeply involved with Riley for almost 14 years, you can imagine that our Story is a vast one. Michael has had six surgeries. His inpatient stays are too numerous to count. We would often boast that he has stayed on every floor and every wing of the hospital. Mom knew all the shortcuts to where we were going. We even knew where the best parent showers were before all the rooms were remodeled to include family facilities. He has stayed in each of the ICU units, one for over a month. He would visit to the ER, Physical, Speech and Occupational Therapies, Wheelchair Clinic, Infant Clinic then the Cerebral Palsy Clinic, Neurology, Orthopedics,, Urology, Pulmonology, Dental and Ophthalmology . As you can imagine in those early years Riley became our second home.

God has blessed us with Michael’s improved health over the past few years. But Riley still is our home away from home. Our “Go To” place where we know Michael will get the best of care and that we as a family will be respected. Our philosophy from the very beginning regarding the medical field has been “If you don’t play nice, you don’t play at all!” We, Michael’s parents…and his brothers, make the rules and direct his care. The doctors understand that they are our vehicle to getting that care. At Riley, they believe that the family of a child in their care is the best and most important part of a child’s tract to wellness. The family knows the child. They know what will work best for that child. The doctors see the child only for a few minutes…even when they are inpatient. The doctors have just a small view of the child’s condition. It is the family that sees the child daily, knows the symptoms and knows what works best for the child and the rest of the family.

As a teaching hospital, Riley teaches their students to listen to the parents. Listen to their concerns and their opinions on the child’s treatment plan. This is unusual in the medical field, although a lot of children’s hospitals are taking Riley’s lead and are realizing it is important to include the family in their child’s medical plan.

You all know, I think by now, that Riley is one of the premier children’s hospitals in the country. This is something to be incredibly proud of. The care that children receive at Riley is second to none! We are so blessed in the fact that Riley is in our backyard! As a matter of fact, our family in Michigan has repeatedly asked us to move back home to be close to them but we have refuse to because Riley is only 40 minutes away from us now. Yes, there are a few fantastic children’s hospitals in Michigan but they are not RILEY!

Probably the most important part of our Riley experience is the way our family feels at Riley. We (all of us: Mom, Dad, brothers, and Michael) are at home at Riley. All employees at Riley strive to welcome families and patients and treat them with RESPECT and LOVE. Over the years, we have made many friends at Riley. We feel comfortable and at home. We can relax in the fact that Michael will get the best care

possible and that we will be cared for in the process. Brian and Eric know that their brother has the best doctors for him and as a result have less anxiety. The boys have learned to be huge and powerful advocates for Michael as a result of the fact that the staff listens to their concerns.

Lastly, Michael knows that he will be cared for at Riley. We have had the need to go to other hospitals that were closer to home. Hospitals that, unfortunately, didn’t have the slightest idea how to care for him because they don’t usually care for kids with all of Michael’s complicated conditions. Michael knows the difference in a staff that is not confident in what they are providing him. He will be very agitated and express his frustration and fear. We have had to use these hospitals to stabilize him for the trip to Riley. Michael has been known to cry from the time he gets to the other hospitals and the entire ambulance ride. However, you can visibly see him relax as soon as we pull into the ambulance bay at Riley. He knows he is safe there. He knows he will get better there. He knows that Riley is his “home away from home”. That feeling is “Priceless!!”

Our entire family wants to thank each of you for your dedication and hard work to raise money to allows Riley to continue this quality of care for EVERY child that needs it. Riley doesn’t take government money (grants or subsidies) and your donations fill the gap between costs and what insurance pays. Your time, effort, and money is SO important to our family. We wouldn’t be where we are without YOU! Michael wouldn’t be the happy, loving, smiling young man that he is without YOU! For that we are eternally grateful!

Addison’s Riley Story:

On Myrtle Beach vacation of summer 2013, I (mom) found Addison standing in the condo bedroom doing a very strange shaking spell. Her elbows were bent up and her hands/ arms were both shaking like she was trying to shake off excess water. She was also spinning in a slow, lethargic circle with her right foot as the pivot point. She also would not respond to me when I “talked” (and yelled) because she wouldn’t answer.

When the episode ended, Addison explained that she could hear me, but couldn’t talk back. She explained that this had happened to her before and that she had actually been able to “stop” some of them by trying to relax calm down.

When we returned home from vacation, we scheduled an appointment with her Ft. Wayne pediatrician, who ordered an EEG and referred us back to her pediatric neurologist, Dr. Joe Ottinger. Dr. O had taken care of Addison when she’d had a grand mal seizure at the age of 2. Dr. Ottinger found nothing abnormal on the EEG so he ordered an MRI. We went for that the next day. Before Addison was even done with the MRI, the tech told us we had to go back to Dr. O’s office immediately.

Dr. Ottinger explained the MRI showed a tennis ball size tumor on the back left side of Addison’s brain that must be removed. We were all scared. Dr. Ottinger asked us to wait as he contacted Riley Hospital because Addison would receive the best specialist care there. He mentioned hoping we could get connected to Dr. Jody Smith, in his opinion, a most excellent pediatric neurosurgeon. We didn’t know then, but we do now, that “most excellent” is an understatement.

God was watching over us as Dr. Smith, a very BUSY pediatric neurosurgeon, happened to just have a surgery cancellation that following Monday only if we could come see her for a pre-surgery appointment tomorrow, a Friday.

So we started sharing Addison’s story with family and making all the plans we could to not only get Addison, Mark and I to Indy for the pre-surgery appointment but even more. Addison’s grandparents, Uncle Brian, Aunt Kelly, and Aunt Tricia were HUGE help. Grandma Misch, Uncle Brian and Aunt Kelly made plans to stay in the extended stay hotel tool we got so that Elle and Christenson were close to is during our time in Indy from the night before surgery until we came home. Aunt Tricia took care of our broken washing machine and on and on.

On Sunday, Addison stood in front of our ZUM church family and explained the tumor, what Dr. Smith would do on Monday and that she believed God would take care of everything. That evening all 5 of us loaded up the car and headed for the hotel. That night there was NOT much sleeping for Addison, her dad or me. We were all nervous.

The next morning we went in EARLY to check in for surgery. The front desk man even told us that part of Addison’s fan club was already up in the waiting area.

She did all of the pre-surgery get ready and finally it was time for us to leave her. As we walked her to where they would sedate her and do another MRI she had the opportunity to look up to the waiting area and wave to her growing fan club 🙂 She was SO brave!

We (Mark, Elle, Christenson and I) spent 16 hours waiting with 24 different friends and family members. Eating snacks, taking walks, drinking Coke, playing card games, sharing meals, and waiting. We cannot thank Riley enough for the top of the hour check ins by the nurse with information about surgery progress. A special thanks must be paid to the surgery nurse who insisted on our behalf that we get a Ronald McDonald in hospital room for the night. We watched the waiting room fill up and then empty around us. Addison was the first patient in and the last patient out. When we FINALLY got to see Dr. Smith after surgery, she still looked like a rock star! (Her residents looked like they were about to crash!) Dr. Smith shared that the tumor was both solid and vascular but that she was confident she has removed everything and taken care of the spot where the tumor was most attached and growing from. She explained the tumor had both malignant and benign characteristics and would be sent to Mayo pathology to help determine what the tumor was. By this time, we where allowed to go back to recovery to be with Addison. She had a crazy hair do done to keep her hair away from her incision. She told us all kinds of crazy stories about chocolate bunnies and dinosaurs as she came out of the 16 hours of sedation.

She spent the next 2 nights in pediatric ICU with more great nurses who took great care of her and us. Her brother and sister, aunts and grandparents took turns coming in with Mark or I to see for themselves our own miracle. We shared our story on FB with our family, friends, community, and school coworkers. The support of encouraging words was amazing. I got to sit and read peoples comments to her and let her see all of her likes on our posts. She was gaining strength and balance the whole time, managing pain along the way. Her body had some major pressure marks on her shins and hip bones from laying on the surgery table for so many hours. These bothered her most.

Late Wednesday evening she was moved to a room in the new Simon Tower. It truly was the Hamptons like the PICU nurses had said! The three of us rested there. The next day she was doing more to get up out of bed, stay wake with all of her fan club visitors, and move around. She was eating well (and even got some Cheesecake Factory cheesecake from her youth leader Mike and his daughter Abby!)

On Thursday after a final check in with Dr. Smith and the OT AND PT they Addison go home. Dr. Smith said she would heal best at home and she was right. With a spreadsheet to track all the meds she needed for awhile and an air mattress set up so she could be with all of us in the living room we were back at home really resting and healing.

Once home Addison had an appointment to follow up with PT as she was still experiencing some right side weakness when we left Riley. At that evaluation her right side actually tested STRONGER than her left side.

Addison only missed the first 3 days of school (to make her mother happy, not at her choice) and after she got back into school she never skipped a beat. She did great academically at school and kept up physically as well too. After Dr. Smith saw Addison for a follow up appointment she was actually released for sports and ran the last 4 meets of the middle school cross country season. She was amazing, she is amazing. We thank God for our miracle, Dr. Smith and the healing that happened for us at Riley Hospital.

Bella’s Riley Story:

We found out about Bella’s diagnosis of Spina Bifida when I was 18 weeks pregnant. She was born at 38 weeks at IU med and was taken straight to Riley for surgery. She had surgery on her back to close her spine at 5 hours old. We stayed at Riley for 8 days. For the first year we made weekly trips to Riley to get cast put on her legs to correct her club feet and to bring her legs down. She has had 5 additional surgeries in her 4 1/2 years of life.

Bella is spunky sweet little girl. She has the biggest heart. She is paralyzed below the knees and has dislocated hips. She can walk some with a walker or forearm crutches, but usually crawls or uses a wheelchair to get around. We are so thankful for what Riley did for us, it has allowed our little girl to do amazing things. She has pushed the bounds of what we expected her to do, and continually does. Thank you for all of your support of Riley and the miracles that it makes happen.

Oliver’s Riley Story:

Oliver is the Gilkison’s miracle baby. He was born February 3, 2009. He has surpassed all odds and expectations set before him. Though there were no signs of problems during the pregnancy, Oliver was not breathing upon birth. He was revived, but still suffered from breathing difficulty during his first few weeks of life. While napping, Oliver would stop breathing and turn blue. As the episodes began happening more frequently, Oliver’s pediatrician recommended that he see a pulmonologist at Riley Hospital for Children.

Upon arriving at the pulmonologists door with our stories of “blue” spells and having a few spells in the office the Dr. sent us off for a sleep study. The sleep study was supposed to last a full 3 hours. After 2 hours they stopped the study and admitted us directly into the PICU. Over the next few days we endured a whirlwind of doctors and theories, but the common thread was that Oliver had obstructive apnea. They did a bronchoscope and determined that he had laryngomalacia, and a few days later he had supraglottoplasty. Oliver showed improvement in many ways. However, a week after the supraglottoplasty surgery he had a follow up sleep study, and to our surprise he still had numerous apneas. That was the first time the tracheotomy or trach was mentioned. They did see that he was improving in person even though he was declining on paper, and decided that we could go home for the weekend with the promise to return the following Monday for another sleep study.

We were confident Oliver was making a turn around. We were wrong! His sleep study got worse. Oliver had more obstructions, longer apneas, and higher CO2 levels. Another concern was that he was not hyperventilating despite his elevated CO2 levels. Oliver was immediately admitted, on March 16, 2009, since it appeared that Oliver was asphyxiating himself. The doctors ran several tests to look for causes of the apneas and obstructions other than floppy airway. The geneticists and metabolic doctors told us they didn’t see anything too out of the ordinary, but that they would be watching. Neurology thought that it wasn’t brain related and the pulmonary team thought that it might be a genetic condition called Ondine’s curse. The true problem was that Oliver had serious issues and no proponent to point at. During Oliver’s stay we watched his condition worsen. The rule of thumb is that when a nurse walks fast, you worry; when they run, you panic. He was making the nurses run as he frequently set off his alarms.

After doing one last consultation with all the different departments and exhausting all of our options, we agreed to the tracheostomy. Oliver had his tracheotomy at 1:30pm on April 8th. A few hours after his surgery, he was breathing on his own and feeding normally. Finally, we thought problem solved. This was only the beginning of the next chapter in our story. The next evening after the trach was placed; Andy was at Oliver’s bedside and noticed he wasn’t acting normal. A few minutes later Oliver had a seizure and stopped breathing for 20 minutes. Fortunately, the nurses were able to stabilize him by putting him on the ventilator (April 9, 2009).

This was a major step backwards for us. Oliver let the vent do all the work for about 24 hours until the results of a blood test indicated he was extremely anemic. Oliver received a

blood transfusion that gave his breathing a jump-start. However, his breaths were still very shallow and inefficient. The purpose of the ventilator was to give him bigger more efficient breaths, rather than breathing for him as before. A week after the trach Oliver had a follow up sleep study. On the positive side of things, he only had a few brief apneas, which allowed the doctors to rule out central apneas. The study also indicated Oliver still had very high carbon dioxide levels, and was breathing very rapidly and in a shallow manner. As a result of this and the previous events, the doctors told us Oliver would stay on the ventilator for an indeterminate amount of time. Oliver has since been given albuterol, which has brought his carbon dioxide levels down and given him steady strong breaths.

Oliver was sent home on the ventilator after every test came back negative for why Oliver was experiencing breathing troubles. Because they did not have a diagnosis, they could not give us a prognosis. Oliver came off of the vent Christmas of 2009! He had his trach until March of 2010. His stoma had not closed on its own so in the summer of 2011 it was surgically closed. While in surgery to close the stoma they took a muscle biopsy of his thigh. This biopsy confirmed that he had mitochondrial myopathy complex one deficiency (Mito: A neuromuscular disease that is progressive in its degeneration.) This then explained all of his breathing problems, and now his autism but even with this diagnosis we do not know all of what is to come for Oliver’s future. So we move forward blindly only with the knowledge that this is Oli’s journey and lucky are those that can share it with him.

Isabella’s Riley Story:

Isabella was born with ESRD due to renal dysplasia. While her mommy 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.

Braden’s Riley Story:

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!!!

Mickey’s Riley Story:

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!