Abriah is a beautiful light in her families life. She was born healthy and began developing normally until around the age of one. He family became concerned when she wasn’t meeting milestones like walking. Their first thought was maybe she was a late bloomer, then around 18 months they thought that something could be wrong with her legs. Her mom then requested a second opinion from a specialist. It was around this time Abriah started loosing abilities she had acquired like: self feeding her favorite baby snacks, holding things, she knew how to crawl but she slowly forgot how to get into crawling position, she no longer knew how to sit up, lost trunk support, then head support, she smiled less often & lost the ability to play with her toys.
As time went on she continued to regress. MRI’s show the deterioration of her brain slowly becoming worse and worse with time. She’s missing the white matter that makes up part of our brain. Due to her regression her feedings became difficult. She lost the ability to chew and swallow so she was very thin- weighing 20lbs at 3 years old. She began to aspirate liquids into her lungs so a g­tube was placed to help her feedings and calorie intake. She now only feeds by g­tube and no longer by mouth.
Most recently Abriah has developed problems breathing and it’s made her chest bell shaped; she is currently waiting to see a pulmonary specialist. She can move her legs and arms but has she no control over the movements. She’s considered blind because she can not processed by her brain- she will only react to bright lights once in a while.
Test with diseases with similar symptoms have been run and they all show negative. Her test have been sent to the university of Washington were a group of geneticist will be studying her DNA and going over her results. As of today she has baffled teams of Doctor’s and geneticists. Her family is hoping for a diagnosis, although they know there is a chance she could remain an undiagnosed child. Abriah’s family continues to have hope and enjoy every second with her.

Photography donated by Mckenzie Anker