Magnolia's Story

Magnolia Jacksyn Bradley 

• What condition was your child born with? NonKetotic Hyperglycinemia (also called Glycine Encephalopathy)
• What were some of the biggest challenges that come with this diagnosis? Maggie Jack is nonverbal and non mobile. She has seizures daily and is gtube and wheelchair dependent. She has severe developmental and global delays. She takes four different seizure medications, three different respiratory medications, and one medication specifically to lower her glycine levels. She requires a very specific recipe of ketogenic formula, mixed daily. She has to receive CPT and suction for her lungs daily. 
• How has this diagnosis impacted you and your child's day-to-day life? Our daily life now revolves around Maggie Jack’s care. When we leave the house, we have to consider how long we’ll be out and plan for her feedings and meds accordingly. We had to have a wheelchair accessible van and had to add a ramp to our house. Every room in our home is set up to accommodate Maggie Jack in some way. We spend a LOT of time in the hospital for respiratory illnesses, meaning we have to split up our family so someone can stay with her and someone can stay with her older siblings. 
• What do you wish others would know about your child's medical condition? NKH is a very rare condition, occurring in about 1 in 75,000 births. 80% of children with a severe case like Maggie Jack don’t survive the first two weeks of life, and of those that do, the majority won’t see their fifth birthday. Maggie Jack has many things working against her, but she is a fighter and she loves attention just as much as any toddler. I wish people would see the child and not the wheelchair or the illness. I wish people would teach their children to speak to and interact with special needs kids. 
• In what ways has your child inspired you or others? Maggie Jack…she literally saved our family. Knowing our child has a terminal illness has changed the way we do everything - including how we love each other. My husband and I were in a very rocky place in our marriage when she was born. We came together spiritually and emotionally to save our daughter and fight for her. Our children have learned how to love others better, and are so accepting of children with differences. We created a FB page to share updates to her story from the very beginning, and it exploded to over 2500 people in less than two years. People all around the world follow Maggie Jack’s story. They love all of our children and pray for us daily. Maggie Jack has inspired so many people to just keep fighting for life. 
• Tell me a little about your child (Personality traits, favorite toys, funny stories, etc.): Maggie Jack loves anything that lights up. She enjoys music - especially Pentatonix, Dolly Parton, and Tanya Tucker! Her favorite person in the world is her daddy, and her little face just lights up when she sees her brothers and sisters. She is sassy and opinionated and hates to be left alone. She loves to snuggle and take naps with people. 
• Please upload your favorite pictures: