Miracle Ride Ambassador Families for 2019
One of our Ambassador families who was kind enough to volunteer this year includes Kameron, who is the 2-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. Click here to register and ride or donate to Team Kameron!
We want to introduce you to Cameron Kirk and his family. They have also volunteered to be an Ambassador Family for The Miracle Ride Foundation. 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.
Miracle Ride Ambassador Families for 2018
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. We returned to that ER and Lucas was admitted to that hospital for 4 days. We were informed by a doctor there that the infection was sensitive to amoxicillin (which he was already on for his ear infections), clindamycin (which he didn't want to prescribe as Lucas was experiencing diarrhea already at that point) and Levaquin (which he informed us his hospital refused to prescribe to minors). So, we were sent home with a prescription of amoxicillin.
Twenty-four hours later, Lucas was in a horrible state – high fever and draining from everywhere possible on a body. At my mother’s insistence, we drove to the downtown Riley ER. I did not know that you could just walk into the ER there. I was under the impression you had to be referred or your child had to have some rare condition. I’m so glad my mother insisted we go and plead for help. We walked in the doors of the ER and walked up to the window. As soon as I was greeted, I burst into tears and begged for someone to help. The kind receptionist took one look at Lucas and called for a nurse. We were quickly ushered into a room and a wonderful team of angels started the task of saving Lucas’ life. They took a history of what was going on, reviewed our discharge papers from the other hospital, and tried contacting that hospital for the lab results. That hospital refused to send them. The infectious disease resident that was overseeing our care explained that they were going to repeat the tests, but in the meantime felt that Lucas would need treatment before we would get the results. He called Dr. John Christenson at home to ask what to do. Even though it was late in the day, Dr. Christenson came back and stayed the night with us saving Lucas’ life. He started him on a Levaquin IV drip and took control of the situation. We spent 6 days in patient, and we are eternally grateful!
A couple of months later, Lucas again was sick with streptococcus-pneumoniae bacteremia. We were admitted to Riley, and, again, Dr. Christenson worked his magic! This time, though, he said that it couldn’t just be a fluke. Something had to be causing this recurrent septic infection. Dr. Christenson started an inquiry that we are just now finally getting to the bottom of. He tested Lucas for cystic fibrosis, immune deficiencies, and a multitude of other diseases, only to come up negative or low, but not enough for an explanation. Dr. Christenson continued handling Lucas’ illnesses through H1N1 in kindergarten and on into early elementary.
Then, just as Dr. Christenson promised, a light switch flipped and Lucas suddenly started doing better. Fewer ear infections, fewer sinus and lung infections – we felt like maybe his body had finally caught on to how it was supposed to work! This lasted for a few glorious years. Then, in 2013, the ear infections started again with a vengeance. Next to follow was the sinus infections, and then our first experiences with pertussis. We suddenly felt like we were back in the toddler stages. We sought out answers again starting in 2016 after Lucas’ second tempanoplasty to try to save his hearing. After going to LA and Cincinnati Children’s Hospital, we ended up at St. Louis Children’s Hospital. There, we finally had someone say they think they know what he is dealing with – Primary Ciliary Dyskinesia. And they said the most glorious words we could have heard at that point – “We are sending you home.” Riley has one of the 8 certified PCD clinics and clinicians in the US, and we could continue investigating this possibility from the comfort of home – our own beds, our own city, our own people.
We have had the blessing of meeting Dr. Stacy Peterson-Carmichael and her nurse, Lou Ann Epperson, RN, this August, and they are just as determined as we are to get to the bottom of the causes of Lucas’ infections. If it is PCD, we are so blessed to be able to receive treatment right here! If it is something else, I know that these ladies are going to be there with us every step of the way. We also know that, if needed, Dr. Christenson is there, too. The PCD Foundation told us that Dr. Christenson is well known there, as he attends their conferences regularly. He was on to PCD for Lucas way back in 2005 – before Riley was a clinic, the name of this disease known, and before much was really studied about a disease for which the foundation was only established 15 years ago.
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. Click here to register and ride or donate to Team Lucas!
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.