Ella was diagnosed with a rare, catastrophic, lifelong form of epilepsy, called Dravet Syndrome. When she was diagnosed at 11 months old, our world turned upside down. It was about that time when CMN stepped in and hasn’t left since.
“A major life-altering diagnosis is devastating to any parent but having an organization willing to step in and help with outstanding medication costs and traveling every few months to see specialists has been a huge relief to our family.”
Brecken Layne was born on May 20th, 2011 in Amarillo TX by c-section to first-time parents, Brandon and Lindsey. He was the first child, the first grandchild and to say he was adored was an understatement.
Shortly after his birth, his parents realized Brecken was much fussier than most babies. He cried all the time, did not eat well, and did not gain weight. He was admitted to the hospital for testing, and everything came back “normal”, so he was sent home. After multiple visits to the pediatrician, Brecken was once again admitted at 3 months old and underwent more testing. This time the test revealed answers. Brecken was diagnosed with a congenital abnormality called Malrotation of his Intestines. Brecken underwent emergency surgery at NWTH on August 26th 2011.
Following his surgery Brecken spent almost a month in the Pediatric ICU. The following year was very rough as he continued to have feeding issues, he was unable to have bowel movements. As Brecken grew, things began to seem “normal”. But in November of 2013 right before Thanksgiving, sickness struck Brecken again. This time more suddenly and scarier. He began to develop a sever rash all over his body. He was once again admitted into Pedi ICU at NWTH. After weeks of unknowns, Brecken was diagnosed with a rare condition called Scalded Staph Skin Syndrome. Following this diagnosis Breck began to see more specialists and was diagnosed with an Immune System Disorder. We learned your immune system is centered in your gut and since he had major intestine issues, his immune system is not complete. He gets sick more easily and stays sick for longer periods of time. He must be very cautious about illness, so routine things for you and I can be devasting for him.
Brecken is an overcomer, determined and so passionate about what he decides to put his mind to. He is an avid baseball player and outdoor sports have been a blessing.
He is truly a remarkable kiddo that has seen more doctors, had more hospital visits, more pokes and blood draws than any kid should! He is a blessing to his family!
Lincoln was diagnosed with Juvenile Idiopathic Arthritis (JIA) a month before his 3rd birthday. That same year, he unfortunately also sustained multiple fractures in his foot and femur. He takes bi-weekly shots for his arthritis which is currently in medicated remission!
He is now back to running, jumping, climbing, and doing all of the things he loves to do. He loves racing, playing video games, and fighting bad guys.
At 2 months old, Conway was diagnosed with Craniosynostosis, a condition that occurs when one or more sutures in a baby’s skull fuse together prematurely, making it difficult for the brain to grow and expand. Without correction, it can cause developmental issues. At 9 months, Conway underwent a successful 4-hour surgery in which the bones in his skull were reconstructed.
Conway handled the surgery beautifully. Your gifts to Children’s Miracle Network assisted with the cost of Conway’s surgery. Gifts to Children’s Miracle Network helped pay for Conway’s surgery.
At the age of 8, Aybreigh became ill with high fevers and other persistent symptoms. She missed school and her friends and family dearly. She was tested for everything; many tests being repeated. She was sent to a specialist in Fort Worth. With medical and travel expenses stacking up as well as new and necessary travel expenses, Aybriegh’s family would not be able to cover them all. Thankfully, the family was told to apply with Children’s Miracle Network. “We were approved, and I can’t explain the feeling of relief that came over us. It was bone deep.” Soon, Aybreigh was diagnosed with a congenital bladder and kidney malformation that had caused kidney disease.
She started some medications as she had quite a bit of healing to do before surgery could be performed to hopefully correct the issue. Six months later she was finally healed enough that the doctors believed the surgery would be successful. The surgery and recovery were long and hard on her, but it was so worth it to know that she would be better and could finally enjoy life again.
“Children’s Miracle Network was right there with us, supporting us and checking in on our family as well as Aybreigh often. When those big bills were rolling in, the help they gave us kept us from being completely overcome with stress. Children’s Miracle Network had been a God send for us. They were put in our life at just the right time. We want to make sure people understand when they give to CMN that it goes to real families in need, real families that are in this community, and real families that truly appreciate it.”
