Rally for Riley Fundraiser
Riley’s Story as written by his mother Kaylynn Kuehl …….
Riley was born at 35 weeks with Gastroschisis, a birth defect in which the intestines protrude through a hole in the stomach, just to the right of the umbilical cord. After birth, Riley was rushed into the Neonatal intensive care unit, where he spent the next 147 days. Intubated, sedated, and 100% dependent on parenteral nutrition, a form of IV nutrition designed to bypass his damaged GI system, delivered via central line, a long term iv that was placed in his chest that goes all the way to his heart. He underwent 5 abdominal surgeries while in the NICU. After discharge from the NICU we spent an additional 2 years in and out of the hospital with bowel obstructions, central line infections, and even more surgeries. Riley had a major operation in February 2016 that landed him in ICU , where he was in a medically induced coma for 19 days, and flat lined 4 times. He spent an additional 2 months inpatient being weaned off of IV narcotics slowly, to avoid withdrawals. He awoke from surgery with a jejunostomy, a pace maker, and several feet of bowel removed, resulting in short bowel syndrome, a life threatening disease. After a lot of hard work and being denied once We finally were able to be transferred to Boston Childrens hospital in July ‘17, to be under the care of surgeon Dr. Mark Puder, at the number one Childrens hospital in the nation. Since then we have had to fly out to Boston every 6-8 weeks to get the care he needs. This will be the same routine until he is 18 years old. Since then Riley has made incredible progress since the transfer. Before he only weighed 11 pounds and now he’s 35 pounds. He was in the hospital every 2 weeks with infections. Since the transfer we have not been inpatient until the surgery.
Riley is like a whole new child, happy playful and enjoying life to the fullest even with the circumstances. Riley had yet another surgery, on August 20th 2018 making this the 12th surgery to date for the 3 year old. This surgery consisted of reconnecting his intestines, placing a gastrostomy tube, liver biopsy and removing a coin from his belly that he swallowed. Riley always wanted a belly button so thanks to Dr. Puder, Riley now has a surgical bellybutton that he is more than happy to show off. As a result of the latest surgery, Riley has encountered his very first bowel movement which has excited everybody. At long last he has finally been able to spend his days without the colostomy bag which has been with him for most of his young life.
Our mission written by Johnny & Jenny B …..
Riley has made great strides since being accepted into the program at Boston Childrens Hospital but his struggles are far from over. He has good days and not so good days. Riley is now just beginning to be able to eat tiny amounts of solid food which is amazing in itself. His digestive system is literally learning how to function because it has been dormant since birth and this process can take many years. Riley currently must be attached to machines 14 hours per day in order to get much needed nutrients and hydration into his body.
On two occasions, October 18th and November 12th of 2018, Riley missed very important appointments in Boston due to financial difficulties. Missing appointments can jeopardize Riley’s participation in the program. It would be devastating losing the vital care he receives in Boston. The childrens hospital does provide assistance with airfare for Riley and his mom but there are other expenses such as hotel, food, transportation plus other things that add up quickly due to fact that some of these visits last up to 3 weeks at a time. There are also other medical expenses incurred that are not covered by insurance. All this plus time missed at work can make things really difficult.
Riley’s mom Kaylynn is an amazing person. Kaylynn, who resides in Morrison Oklahoma, is employed as a waitress and also works in retail. She is a proud, hardworking single mom and her dedication to her son is inspiring. She never asks for help from anyone and shoulders the challenges put in front of her like someone well beyond her years. This young mom isn’t asking for a handout and is even uncomfortable with this fundraiser thing. This is exactly the reason why we felt the need to reach out to the community.
Our small family business “Tailpipe Events” (which promotes car shows and classic car auctions in Oklahoma) will make a $25 donation benefiting Riley for every classic car that signs up to run through our Inaugural Spring Enid Classic Car Auction scheduled for March 30th 2019 at the Garfield County Fairgrounds in Enid Oklahoma. Tailpipe Events will also make a donation for every car sold at the event. Riley and his mom Kaylynn will be helping us out at the event. This is a family friendly free admission event so be sure to come by and say Hi. Riley will put a smile on your face for sure. We are adding a “Go Fund Me” account in addition to the event fundraiser to enable us to reach out a little further for support. Our goal is to simply raise enough funds to help cover expenses for Rileys needs over the next few years. With as much as this young family has on their plate, we would like to take the stress of financial hardship away and let the all of the focus be on Rileys healthcare instead. To learn more about our Enid event, please visit TailpipeEvents.com, email us at firstname.lastname@example.org or give us a call at (405) 762-8009. We appreciate your time spent reading this. Please share and help spread the word. Thank you & God Bless!