Photography by Niki Murphy Photography
There truly is no buddy like a brother! These two boys share a room and have a lot in common. Both are pretty cool dudes with a lot of love to share with the world. Getting to know Nathan and Mattie means being blessed with the gift of joy.
Nathan was premature and fought for survival from the day he was born due to a life threatening infection that caused damage to his lungs and digestive system. He spent about six weeks in the NICU and struggled with learning how to breathe, eat, and grow. As a baby, he had continued difficulty eating and breathing and frequently spent time in the hospital due to respiratory and gastrointestinal disorders.
Before Nathan turned two years old, he was diagnosed with eosinophilic esophagitis as well as autism. When he turned three, he got a feeding tube because he was losing weight and needed extra nutrition so he could grow. When he turned for, experienced gastroparesis and shortness of breath leading to hospitalization. While Nathan was in preschool, he had surgery to stop frequent vomiting and to facilitate healing of the lungs. He was also diagnosed with mitochondrial disease the summer before he started kindergarten.
Over the past 5 years, Nathan’s doctors have worked together with his family in order to find a balance of addressing his medical issues. Three years ago, Nathan’s feeding tube was changed from a g-tube to a gj-tube in order to keep him from aspirating while he got tube feeds. Two years ago, Nathan had another surgery to help ease his intestinal failure, give him more independence, and help preserve his dignity.
His parents know that his health issues are very serious so they try each day to celebrate and encourage Nathan to live the fullest life possible. Nathan loves swimming, camping, horseback riding, going to church, video games, as well as spending time with his brother and friends. Like many young men, he also enjoys watching science and engineering shows on Netflix and Hulu, especially Cosmos and Mythbusters.
Mattie was born premature, but reached all his milestones and was a happy baby until he was 9 months. When he to eat began solid foods, Mattie started to have serious digestive issues. At his first birthday, he was not gaining weight so Mattie's doctor ordered blood work that came back with concerning results. Mattie was immediately sent to the hospital for a blood transfusion. After two months in the hospital, countless tests and surgery, Mattie came home from the hospital with a feeding tube and oxygen at night for sleep but no real answer as to what was wrong.
Due to weakness during his hospital stay and his declining heath, Mattie lost all of the early milestones he had reached and had to start learning all over again. Since then, he has struggled to keep breathing, eating, and developing. After extensive testing, Mattie was diagnosed with eosinophilic esophagitis, autism, and mitochondrial disease. He also has neurofibromatosis type 1, a tumor on the optic nerve in his brain, and a tumor on his cervical spine.
His parents were told that as Mattie grows he will have more and more tumors, and sadly that has been the case. He now has multiple tumors in his cervical spine, a small growth in his brain, an optic pathway glioma, and a plexiform tumor growing around his spine. He had a major surgery to partially remove a tumor around his cervical spine in the fall of 2016 and spent 3 weeks in rehab. His doctors are monitoring the tumors for now and they will be treated with either chemotherapy or surgery if and when they become symptomatic.
Mattie loves going to school, riding horses, swimming, and playing video games, and loves his friends and family. He is one of the coolest kids out there. He is a sweet, funny, charming, stubborn, smart, little guy who oozes personality and is really fun to be around.
Due to the complexity of both brothers’ medical issues, they are under the continuous care of the Complex Care team at Children's Healthcare of Atlanta. Balancing these complex medical issues with childhood and family life can been quite exhausting and difficult to manage. The strength of the boys and their fight to thrive despite their challenges helps keep the family going.
No matter the prognosis, celebrating just how beautiful life can be with these amazing brothers is the focus of each day. Sunshine on a Ranney Day wanted to help them capture each ray of sunlight and bring hope into their home through a brilliant room makeover designed especially for this dynamic duo!