“We were given a grim diagnosis from the start,” said Mrs. Callaway. “We were told he would never make it to birth and if he did, to cherish the short time we would have with him. The hospital had us fill out a death and funeral care plan before we were to deliver him.”
Raylan is truly a miracle. Raylan was diagnosed with Alobar Holoprosencephaly (HPE) at 20 weeks gestation. HPE is a rare brain malformation affecting 1 in 5,000 to 10,000 live births. Current studies indicate that only three percent of all fetuses diagnosed with HPE survive birth, and only one percent survive longer than 6-months. Raylan is beating the odds as he is now 7 years old!
Raylan was born by C-section due to his head being so large. He had hydrocephalus, also known as water on the brain. He was 11lbs 11oz and most all that was in his head. The day after he was born, the family asked the doctor if there was anything that could be done to help Raylan be more comfortable. The doctor wasn’t optimistic and told Raylan’s parents that he couldn’t feel anything and to just let nature take its course. Thankfully that is not where his story ended. “We had an amazing nurse who stayed in the room with us after that doctor left,” said Mrs. Callaway.
This nurse went above and beyond to help this family. She called in an amazing neurosurgeon, even though he was on vacation, he came to meet Raylan straight from the airport. “This new doctor came in the room, picked up our son, and gave us the most optimistic news we had heard since hearing of his diagnosis.” After an examination, this new doctor believed that Raylan could live as long as 18 to 24 months but that would require putting in a VP shunt in Raylan to drain the extra fluid from his head. The surgery went well and the Callaways were able to bring their son home. Not long after being home, they noticed that Raylan was extremely irritable and were struggling to feed him. The shunt was infected and this required another surgery and six weeks in the hospital. The first two years of Raylan’s life were tumultuous and even the neurosurgeon who gave the family their most optimistic life expectancy is amazed on how well he is doing.
Raylan has Cerebral Palsy with spasticity, diabetes insipidus, ventricular shunt for hydrocephalus, and feeding tube all due to having HPE. He is nonverbal but communicates with his facial expressions. He has no head, neck, or trunk control and relies on his family for total care. Raylan is in a wheelchair. Through the last couple of years, he has had to have hip surgery due to his spasticity pulling his legs out of his hip joints. “Raylan’s spasticity is one of our biggest struggles,” said Mrs. Callaway. “Raylan gets over stimulated easily causing his muscles to get tight. When this happens his whole body gets red and splotchy. He begins shaking all over, screaming, he gets sweaty and his blood pressure spikes.” This condition is called storming.
Despite all this Raylan is a happy guy with a contagious smile. He loves his sisters and he loves being the center of attention.
Raylan has three amazing sisters – Mackenzie is 18, Miya is 14, and Madi is 11. They are great with their little brother and include him in everything they do. Mr. Callaway works as a Sheriff Deputy for Webster County while also owning and operating a small excavating business, Callaway Excavating. Mrs. Callaway stays home to care for Raylan. Going from therapy appointments to doctor appointments and overall daily care, it’s a full-time job.
“Receiving an accessible vehicle is such a blessing for our family,” said Mrs. Callaway. “I currently drive a Suburban, but it is almost impossible for me to go anywhere alone with Raylan. Raylan’s wheelchair weighs 72 pounds. It is a struggle to lift it in and out of the back of the Suburban by myself. Raylan is also getting bigger. I have to transfer him to his car seat, which he is also starting to outgrow. It has gotten to where I would rather stay home than get him out. A handicap accessible vehicle means he could stay in his wheelchair and we wouldn’t have to lift it, and him, in and out of the back of the Suburban.” This grant would make our life so much easier to go places and make the going more enjoyable.
For more information about Chive Charities, visit chivecharities.org. For more information about United Access, visit www.unitedaccess.com.