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This year we are super excited to be adding a Stoby’s Pancake Breakfast to our list of events. We will be donating 75% of proceeds to the family of Greyson Gilliam and retaining the other 25% of proceeds to help families throughout the year.
Greyson Reid Gilliam, of Russellville, is the 2-year-old son of Andrea Gilliam. He has an older sister, Katlyne (19), who attends school at Hendrix College. Greyson’s grandmother, Pamela Gilliam, is one of his biggest fans. If you see Greyson around town, he is likely sporting a dinosaur and/or monster truck!
Greyson was a surprise baby and was considered a high-risk pregnancy early on due to mom’s age. Extra tests were ran as a precaution, but the results were all but expected. The family learned that Greyson had multiple abnormalities. This sparked a referral to UAMS and weekly visits for the duration of the pregnancy. As a result, mom lost her job due to excessive absences. As the weekly visits progressed, mom was told that Greyson may not make it long after delivery and would be sent directly to ACH after the scheduled C-section.
Greyson made an appearance on July 14, 2016 but was sent to ACH immediately for respiratory distress and further testing. When mom was released from UAMS, she joined Greyson at ACH where he stayed in the NICU for months. After what seemed like endless testing, Greyson was diagnosed with VACTERL Association, which affects 1 in 40,000 kids. With this diagnosis, Greyson had a malrotation of the intestine, most of his organs positioned on the opposite side that they should be, a tethered cord, a hemivertebra spine, congenital scoliosis at a 45-50 degree curve, missing his left kidney and right kidney is a hydro nephrosis grade 1, his ribs are fused together with one side missing a rib and the other side with an extra rib, and he has a hole in the heart that will need to be surgically closed. In addition to this list, Greyson has diverticulum of the bladder, restrictive lung disease that puts him at risk for respiratory infections, is missing his right radial bone and thumb, and he can’t gain weight since he burns so many calories in effort to just breathe. Greyson makes frequent trips to Little Rock for medical care and currently sees a total of 14 doctors including pulmonary, cardiology, and orthopedic doctors that are formulating a treatment plan. Greyson is also a regular at Pediatrics Plus in Russellville and absolutely loves the therapists that he works with. The physical therapy, speech therapy, and occupational therapy he receives there has contributed greatly to the improvements he has made thus far.
While Greyson may have been a surprise baby, he also saved his mom’s life in the process. During the multiple genetic tests that were ran on Greyson and Andrea, Andrea discovered that she carried the BRCA2 gene that can cause specifically breast and ovarian cancer. Andrea had a full hysterectomy and a double mastectomy; basal cell carcinoma was found. She would have never known without all of the genetic testing that Greyson sparked – Greyson saved his mom’s life.
Here is the registration form for mail-in registrations. This form must be postmarked by April 1, 2018 to receive the early registration price.
Early Registration Form
Braxton Dale Shanek was born on July 22, 2017 at Conway Regional Medical Center. He is almost six months old. Braxton’s parents are Dale and Mallory Shanek. Braxton has no siblings since he is Dale and Mallory’s first child. Braxton was born full term with no pregnancy complications. At birth, he was diagnosed with meconium aspiration. While being bagged for the meconium aspiration a hole was blown in one lung. This caused all of his organs to be pushed to the side. Braxton was stabilized and rushed to Arkansas Children’s Hospital. Once at ACH, he was placed on an ECMO machine. An ECMO machine is life support for children. Braxton remained on life support for three and one half days. Braxton spent six and one half weeks in NICU and then moved to ITU where he stayed for 15 weeks. During his five month stay at ACH, Braxton was intubated four times and had to be reintubated due to breathing complications. His throat was scoped two times before it was determined that he would need to have a tracheostomy and a G-tube inserted. Braxton takes nothing by mouth.The ENT doctor that scoped his throat said when his throat collapses the scar tissue sticks together and does not reopen and then ends up healing together resulting in his airway closing. The ENT placed a stint in for seven weeks to try and open the airway. The stink was successful. Also during this time, it was determined that Braxton is blind. After seeing a corneal specialist at ACH he was diagnosed with a rare form of blindness. His corneas don’t work properly. Braxton is only able to see light.
It took three months to have Braxton weaned off of the ventilator and two months to be weaned off of morphine and methadone.
Finally on December 21, 2017, Braxton was able to go home for the first time. It was a short
stay because two weeks later he is now in Pittsburgh, PA for a corneal eye transplant. Braxton now has two corneal transplants and he and his family will have to remain in Pittsburgh for six to eight weeks. Hopefully his body will accept the new corneas. The doctor is still unsure how well he will be able to see. Braxton will have to have his trach for two to four years before it can be removed. As the doctor explained to Dale and Mallory, “This is going to be a marathon, not a sprint”.
Dale works for Precision Pipeline. Mallory had to quit her job as a dietician to stay home with Braxton. Braxton has to have two caregivers. Mallory’s mom, Sherri Selman, is Braxton’s other caregiver since Dale works.
Ethan Rey Gutierrez is the 3 year old son of Brandon Gutierrez of Dardanelle and Krystal Rhinehart of Dardanelle. Ethan has one little brother named Jeremiah(4months) by his father Brandon, and stepmother Marily.
Ethan was having some leg pain, which we all thought was growing pains because he only mention that his leg had hurt a couple of times and then it was never spoken of again. A couple of weeks went by and I had noticed that he was getting tired quicker, he had bags under his eyes, he was getting sick more often and last but not least his leg pain was back. We took him to the doctor. I told her about everything that had been going on and she told me that she was going to run some blood tests on him. The test results was something that parents never wanted to hear. They immediately sent us to Children’s Hospital in Little Rock where he was later diagnosed with Acute Lymphoblastic Leukemia on January 17th 2018.
A disease that is very common in 3-5 year olds, and there is no known cause. The only comforting words in that moment was that we were also told that it’s a very curable disease. A couple of days later he had a bone marrow biopsy, lumbar puncture, and a port put in his chest. We were blessed with negative results from the lumbar puncture which meant that they didn’t find any cancer cells in his spine. He has gone through a few rounds of chemo and strong steroids. He will continue his treatments for the next three yeas, and then come in every six months to a year for blood work to make sure that the cancer doesn’t come back. He has his ups and downs, but overall he does the best he can to be the cheerful, goofy cowboy we all know. It’s going to be a long road ahead for all of us, but with the support of Ethan’s family and friend’s rooting him on, I know he is going to beat this disease! #PRAYFORETHAN #ETHANSTRONG
Now accepting nominations for the 2018 River Valley Superhero 5K beneficiary!!
Submit your nominations via email firstname.lastname@example.org
Deadline for applications is January 21, 2018