Miracle Ride Ambassador Families 2023
Introducing the Presnell family
including Sean (father), Brianna (mother), and their children, Cheyanne, Leland, and Maverick, who is a Riley Kid.
At 20 weeks, they found during our anatomy scan that Maverick’s left side diaphragm was not developing correctly (diaphragmatic hernia). Our care was transferred to Riley Maternal Fetal Medicine where they did various tests and an MRI to determine the amount of diaphragm present.
I went into labor at 38 weeks and delivered at Riley Maternal Tower on 5/15/2022 where Maverick was immediately intubated and taken to Riley’s highest level NICU. There he was placed on an oscillator (high frequency ventilator), sedated, and we were unsure of how bad the diagnosis really was. At just 9 days old, he underwent surgery to patch his diaphragm and they determined that his liver, stomach, small intestines, and spleen were where his lungs were causing everything to shift to the right and making his lungs not develop properly. They also noticed that a part of the lung called a PDA never closed after birth like it was supposed to. So, they had that repaired in Cath Lab with a closure device. After a few “failed” attempts at extubation, my husband and I decided that it was in his best interest to have a tracheotomy done. Therefore, on 10/7/2022, that is what we did. After extensive training and 212 days in the NICU and PICU, on 12/13/2022 he was finally discharged.
Maverick is currently home and on a ventilator and feeding tube. However, he is thriving! Maverick is on minimal oxygen and we hope to start weaning vent settings in the near future.
The reason why we love Riley Hospital for Children is because of the staff (Nurses, Respiratory Therapists, Doctors, etc.) They are wonderful! My husband and I were so scared and they made things easier. They becamse our second family. The staff built us up as parents and allowed us to “be parents” even though our child was hospitalized. It is their love and compassion that made bringing our son home a reality.
Introducing Aurora Brown (front and center)
and her loving family
Aurora struggled to gain weight as a newborn, which led us to Riley Hospital for Children. It was “two-steps forward: one step back.” Aurora began to reflux her feedings. After months of struggle, Aurora was admitted to Riley as an in-patient. After having an MRI, Auror was found to have white matter loss in her brain and a g-tube was placed. The diagnosis followed, which includes Pyruvate Dehydrogenase Deficiency, Epilepsy/Seizures, White Matter Loss, Developmental Delay, G-tube, Hip Dysplasia (corrected), and allergic to Botox.
Since becoming a patient at Riley, Aurora has come so far! Although she is non-verbal, Aurora has her own unique way of communicating.
We love Riley Hospital for Children because their staff gave us the answers that we desperately wanted and needed. The Doctors, Nurses, and Staff also gave us the tools needed to take care of her. The kindness and care Aurora received from Riley Hospital for Children ultimately allowed her to become the wonderful and amazing person she is. Aurora love riding horses (hippotherapy), swinging, and reading books.
Miracle Ride Ambassador Families 2022
Alia was born with Heterotaxy Syndrome causing her to have a Congenital Heart Defect. She was also a missing spleen and had a Midline Liver. During her time at Riley, Alia has also been diagnosed with Cerebral Palsy due to the brain damage she developed during her second cardiac arrest episode.
When Alia’s parents were asked, “Why do they love Riley?” they responded by stating, “Oh boy, where do I start? The nurses and doctors saved our baby's life not once but twice. They gave us the confidence to take Alia home and care for her in her daily life. Riley's nurses cared for our family like we were their family. The Doctors took every concern or question and gave us an explanation that we could understand. If we did not understand, they would talk us through it until we did. We are forever thankful.”
Greyson was life-lined to Riley Hospital for a perforated bowel where he was rushed immediately into surgery. During the surgery, Greyson went into septic shock and his heart stopped for a full 26 minutes. The wonderful Doctors at Riley were successfully able to resuscitate him, but they did not give Greyson much of a chance of survival. They believed that even if he did survive, he most likely would-be brain dead. During the cardiac arrest, Greyson suffered a pretty severe stroke. Greyson’s mother stated, “The first time I saw Greyson after his surgery, he had multiple tubes going in and out of his body, which was mainly for drainage for his stomach. Greyson’s body retained a lot of fluid, his kidneys were not working properly, and he was having multiple micro seizures. Greyson spent 4 weeks in the Pediatric Intensive Care Unit (PICU) where he was placed on life support for his heart as his body could not regulate his temperature and blood pressure. On February 15th, we were sent home on hospice to help us with his final stages of life. However, there is always hope at Riley.
Presently, Greyson is doing absolutely amazing! He is eating a little by mouth, and doing tons of therapy (PT, OT, Speech) Greyson has even been able to do some assisted standing and sitting.
We were initially told by the Doctors that Greyson lost his vision and we just found out his vision has come back. Greyson has said some words but not many because he can be very stubborn!
Greyson has come so far and accomplished more in this past year than anyone expected. We are working on getting him up and walking soon.
We love Riley because, without the dedication of the Doctors and Nurses in that operating room on January 19, 2021, my son would not be here. They went absolutely above and beyond, and I feel I owe them my life for doing all they could for saving my son’s life.
Miracle Ride Ambassador Families 2020/2021
Sutter Taylor and parents
Sutter Taylor was born September 24th, 2018, at 6 lbs. 8oz. to the proud parents Todd and Nicole. Sutter was a step away from being admitted to the Newborn Intensive Care Unit (NICU) due to low blood sugar. His parents did not know it then but that was a symptom of the diagnosis he received over a year later. Sutter was seen frequently as a newborn to monitor his growth. Sutter was under the 1st percentile on the growth chart for the first two years of his life. Eventually, his parents were referred to an Endocrinologist at Riley to run tests and figure out why their sweet boy was not growing.
After a few blood tests, a sleep test, and an MRI, Endo determined his Pituitary Gland was much smaller than it should be, and he was not producing any growth hormone. Sutter was diagnosed with growth hormone deficiency and now receives an injection of synthetic growth hormone every night before bedtime. It is likely he will need these injections for life. Sutter has experienced other mild delays, but his parents are happy to say that, since he has started the medication, things have improved significantly.
Sutter’s parents are so grateful for Riley and the staff they have worked with during this ordeal. Sutter’s parents stated that everyone at Riley has been so helpful as they have navigated through their new norm. Sutter’s parents stated that they have never experienced such empathy and understanding for their first and only child. They felt completely blindsided and they need and will continue to need the exact care they are receiving through Riley. Sutter’s parents believes that their Riley family has given their son the opportunity to thrive, and they are so thankful!
Layla Taylor and parents
Submitted by Erica Jordan, Layla’s mother
Todd and I went in to find out Layla’s gender at my 18-week appointment. As Dr. Darroca was looking and told me not to freak out but it looked to him as she had Gastroschisis. I had no idea what this entailed for her or me. All I know is I was scared, and it felt like life was at a standstill. For those of you that were like me who have no idea what this is, Layla’s organs were on the outside of her body. This pregnancy felt like an eternity and was one of the hardest things I had to deal with; not only for me but for my whole family. I think it is safe to say Todd and I took it the hardest, but our children had to deal with the both of us not in our right minds. When the day finally came to give birth to Layla on November 23rd, 2020, I was sent to Methodist Hospital to be induced at 37 weeks to ensure Layla was not going to be stillborn. I was expecting only a small amount of her intestines to be outside of the abdomen before the delivery. However, upon delivery, the Riley NICU team came to take her away from me immediately and to also inform us her large intestines, small intestines, fallopian tubes, gallbladder, stomach, and liver were outside of her abdomen.
As I was stuck in Methodist with little information on what my baby was going to go through along with me feeling empty inside, Todd and I had to follow the ambulance not knowing what was happening. When Layla got to the Riley, her Surgeon, Dr. Gray, did something that I believe made Layla's stay in the hospital a lot shorter under these difficult circumstances. There were only a few different options, and he chose, what I believe to be, the hardest but most effective. Dr. Gray pushed everything back into her abdomen without having to intubate her. He then took her umbilical cord and wrapped it around the area to help it heal. Dr. Gray used a little sedative and some morphine, but not too much, to completely put her out but just enough to keep her coherent without being in pain.
Now, all we had to do was wait for her bowels to wake up and start working. Unfortunately, Layla had some complications. Her bowels started pushing through the umbilical cord. Layla had to undergo a hernia surgery at 6 days old. This will be a surgery that she will have to endure again as she gets older. Anyways, I was prepared for Layla to be on the vent for weeks, maybe months, but within a couple days she decided she was ready to be without it. Our next obstacle was to get Layla to hold down her feedings. On top of all this going on, Todd and I had to go through this scary scenario completely alone. This is due to the fact that no one could come to the hospital, and we couldn't be in Layla’s room at the same time due to COVID.
The nurses became our friends and the people we could communicate with on a daily basis. We went weeks without seeing the rest of our kids. COVID definitely made our stay lonely, but we got lots of bonding time with baby Layla. Finally, Layla began eating enough to be able to go home at 18 days old. A day we will never forget, December 11th, 2020. Layla is now 7 months with no complications and Dr. Gray would love nothing more than for Layla to not have to return to Riley. Dr. Gray and Riley Hospital for Children gave us a miracle. We now have our perfectly healthy baby girl and, with all of the complications Layla had when she was born, we were able to take her home in just 18 days. Layla is a true miracle and Riley is the Miracle Maker.
Miles Blasdel Click here to register and ride or donate to Team Miles!
Miles Blasdel loves trains and everything outside! He loves mowing with his bubble mower, playing in the dirt, and soaking up sun. Thomas is his favorite train, but he also loves the Riley train, the train at the zoo, and the Polar Express train too! Miles parents are Matt and Sarah and his little brother and best friend is named Connor.
Miles was diagnosed with Duchenne Muscular Dystrophy at 5 months of age. He has a secondary diagnosis of Renpenning Syndrome, causing significant cognitive delay. Due to the combined effects of a cognitive delay with low muscle tone, Miles had substantial motor planning deficiencies and continues to be delayed in meeting milestones. Miles has attended weekly physical therapy since prior to his muscular dystrophy diagnosis. He quickly added on speech therapy and has recently added in occupational therapy. Miles continues to be seen through multidisciplinary clinic appointments twice a year, has an annual sleep study, and sees many specialties at least once a year.
Miles takes steroids twice a week to slow down muscle damage. He has been independently walking for a little over a year and has accomplished many other goals. We do experience quite a few extra falls, but Miles has a truly tenacious personality. His heart function remains well and he is a trooper for each appointment he attends.
We love Riley for many reasons. We are blessed to have such excellent care at such a short distance from home. We love that they offer a multidisciplinary clinic so that Miles is able to see multiple specialties at a single appointment. It has been really wonderful since we have started speech therapy at downtown Riley, they have a children's area for Connor to entertain himself in during appointments while Miles is working!
Miles and Mason Downey Click here to register and ride or donate to Team Miles and Mason!
We have struggled to understand why Miles would become very sick quite often. Upon recommendation by our Pediatrician, we did precautionary testing to rule out different diseases. Cystic Fibrosis being one. Surely enough, his sweat test results came back high, so we were referred to Riley Hospital. Another sweat test was high. So, at our surprise and the doctors, Miles was diagnosed with Cystic Fibrosis at the age of 7. To date, Miles has been admitted to Riley 5 times for an average stay of 10-14 days each.
Miles enjoys baseball, Basketball, Video Games, School.
As a precaution, we scheduled a sweat test to determine if Mason had Cystic Fibrosis since it is a genetic disease. We discovered Mason has Cystic Fibrosis as well. Mason has more of the gastrointestinal issues. He sees the Riley Clinic team quarterly with older brother, Miles.
Mason enjoys baseball, Paw Patrol, cooking, going to school and taking care of his pets.
Brian and Kristy Downey, the parents of Miles and Mason stated, “Riley is an amazing place. Everyone makes our stay comfortable. Our questions are always answered in detail.”
Miracle Ride Ambassador Families 2019
I want to introduce you to Cameron Kirk and his family. Cameron was diagnosed with Leukemia on April 16th, 2018 at 11 years of age. Cameron was a patient at Riley Hospital for Children this year during The Miracle Ride and he and his family were there waving and cheering the Miracle Ride Riders as they cruised by the front entrance of Riley. That moment helped Cameron, his family, and other patients at Riley forget their worries and feel comforted knowing that these bikers truly care about them. For more information regarding Cameron, please visit the “Captain Kirk’s Warriors” Facebook Page and see how he is progressing through Riley Hospital for Children’s care.
Kameron Kadinger Click here to register and ride or donate to Team Kameron!
Kameron, who is the 4-year-old son of Keith Kadinger and Amanda Jordan. Kameron, or “Kam” has overcome more obstacles in his short little life than most adults. Kam has been diagnosed with AIP (Acute Intermittent Porphyria). Kameron's porphyria is completely different from the typical AIP patient, starting with the rarity of the disease. There have been less than 10 cases world wide of homozygous AIP, also known as homozygous HMBS. On December 27, 2017 Kameron had a liver transplant. With Kameron being one of a kind, the transplant is experimental. Only time and progress will determine its success. However, Kam is progressing well. Please visit Kameron’s Facebook Page at “Kure4Kam” for more information regarding this amazing little boy and his inspirational family.
Presentation of the $250,000 donated to Riley Hospital for Children in 2019
Bill Kingery, Liz Elkes, President and CEO of Riley Children’s Foundation
Dr. David Boyle, Donna Fischer, and Melissa Sexton
Cameron Kirk and Kameron Kadinger 2019 Miracle Ride Ambassadors
Miracle Ride Ambassador Families 2018
Meet Emily Theisen, age 3, daughter of Chris and Elizabeth Theisen from Noblesville, IN. Emily was born seven weeks premature and was released from the hospital with a feeding tube in her nose. After 10 months, physicians were having trouble figuring out why she wasn’t growing and why she was unable to swallow liquids without them going into her lungs. After sending blood tests to Mayo Clinic, doctors diagnosed Emily with Glutaric Aciduria Type 1 (GA1)
GA1 is a very rare genetic metabolic disorder in which the body is unable to process certain proteins properly. This disorder can cause damage to the brain, particularly the basal ganglia, a region that helps control movement. Intellectual disability may also occur. Emily was admitted to Riley numerous times throughout 2013. In August 2014 she was diagnosed with pancreatitis. She is one of the youngest known cases of pancreatitis. In 2014 she spent at least 1-week inpatient at Riley every month except for September. Even with all of her medical challenges, Emily is a fun-loving girl. She loves helping the nurses do vitals and hook up her feedings when she is inpatient. We have spent every stay on 8 East and the nurses and CPAs on 8E have become our family. We are so thankful for the way they make our stressful stays much easier. Whether it’s bringing Emily her favorite dolls or sitting with her and playing so we can run out to get a bite to eat and breathe, they have been there for Emily and her family.
Meet Lucas Davis, son of Nicole and Mark Davis. Lucas was born prematurely after a high-risk IVF pregnancy. At birth, he was placed on a ventilator and on many strong meds due to multiple infections - lung, ears and blood. He spent 7 days in the NICU before coming home. His whole first year we struggled with constant illness - ear infections and ruptures, sinus and lung infections. After a visit to an ER at the end of July 2005, we were called that blood tests done in the ER tested positive for streptococcus-pneumoniae bacteremia. There were other health issues identified as Lucas got older.
Through his experiences at Riley, Lucas came to love the giraffes and river in the lobby, as well as the red wagon that took him there! When his sister was inpatient at Riley during one of her issues, he was quite upset to learn that there weren’t any wagons available to help us take her down to the lobby, to the giraffes and the wishing river. So, Lucas took it upon himself (with his grandparents help!), to open a bank account and raise funds to sponsor a wagon. Through doing chores and sharing his and his sister’s stories, Lucas was able to sponsor a wagon at Riley in his sister’s name so that she and other children won’t have to miss going to the lobby due to not having a wagon. We are so grateful as a family for the following doctors caring for and saving our children: Dr. John Christenson, Dr. Stacy Peterson-Carmichael, Lou Ann Epperson, RN, Dr. Mary Stuy, Dr. Brian Hainline.