Help Leti's fight against rare autoimmune disease

Hi, my name is Jari Lozano and I am a friend of Brianna Reyes. Brianna has been the greatest friend a person could ask for ever since we met in nursing school. With her permission, I created this Gofundme page in hopes of helping her and her family as they face some challenges associated with her daughter’s (Leticia) recent hospitalization and diagnosis.

Leticia is 11 years old and has recently been diagnosed with an extremely rare autoimmune disease called Neuromyelitis Optica. Neuromyelitis Optica is a relapsing disease that is thought to be worse than MS and affects the Central Nervous System (brain, eyes, and spinal cord). Sadly, this is Leti's second severe life altering diagnosis in the last 3 months.

In October of last year Leticia began having painful skin rashes and began having severe nausea and vomiting. She was admitted to St. Francis Childrens in Tulsa for 5 days in Nov. 2021. However, doctors could not figure out what was going on and Leti lost 26lbs, leaving her with a dangerously low BMI of 13. The weight loss was even more significant for Leticia as she already had Type 1 Diabetes that was diagnosed at 3 years old. She also already had severe lung disease and asthma. She began seeing several specialist in addition to those she already saw including endocrinology and pulmonology. She was seen by Neurology in OKC She was already

Over a course of days leading up to Thanksgiving Leti's parents begin to notice she was walking with a limp that progressively worsened. Leti NeuShe was first diagnosed with Type 1 diabetes as a young child. The last year has been especially difficult as we’ve seen Leti struggle with low platelet counts, skin rash attacks, poor appetite, nausea, vomiting, and significant weight loss. After a year of seeing several doctors in Tulsa and in Dallas, including neurologist, rheumatologists, endocrinologists, gastroenterologist, and countless tests, she was finally diagnosed with a rare autoimmune disease called Shwachman Diamond syndrome. Along with all of the painful and uncomfortable symptoms this disease causes, this diagnosis also means that she is at an increased risk for developing leukemia later in life and may need bone marrow transplants later in life if her existing symptoms worsen.

A few weeks ago Leti began to experience gait changes. She started having a harder and harder time walking and getting around and was dragging her leg. Leti has been admitted to Dallas Children’s Hospital because that is where most of her care team is located. They did an MRI and based on their findings the neurologist said he would have expected her to paralyzed at this point. With this, and some additional testing they diagnosed Leti with neuromyelitis optica. She is currently undergoing high doses of steroid treatments and plasmapheresis. She is expected to remain in the hospital for an additional 2 weeks. Christmas is coming up and I hate the idea of Leti spending Christmas there and being partially separated from her family.

While Leti is at Dallas Children’s Hospital her parents are having to switch out while they commute to and from Tulsa to care for their girls (Liliana, Dalana, and Leti) and go to work.