Miracle Ride Ambassador Families 2020
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.