The 6-month old daughter of Jarrod and Tascha Sampson is one of only 122 diagnosed cases of Robinow Syndrome, a rare form of dwarfism.
"Robinow Syndrome is so rare most doctors don't know much about it," said Becky Sinclair, Bryar's grandmother. "There's not been enough cases of it for adequate study, and another problem is not all patients have the same symptoms."
Children born with one of two types of Robinow Syndrome experience dwarfism, spinal malformations, abnormalities of the cranial, facial, eye and ear area due to a gene mutation, which can be inherited.
Parents are usually not the carriers of the gene mutation that causes the dominant form, which is the most common. Children with this version have one or more medical manifestations from the gene mutation on a minor to moderate scale.
The recessive form is rare in the US, while foreign countries report more frequent cases. If both parents are carriers of the gene mutation, they have a 25 percent chance of giving birth to a child with the recessive form of Robinow Syndrome. These children have more skeletal abnormalities and suffer from moderate to severe radial head dislocation, spinal segmentation defects and shorter limbs, fingers and toes.
"Bryar (who has the recessive form) has the smallest chest cavity of all the patients presently diagnosed. She can't grow if her lungs can't expand. A CPAP machine pushes warm oxygen into her lungs to relieve respiratory distress, but her heart and respiratory rate is so high she's burning all her calorie intake," Becky said. "The tracheotomy keeps her from communicating. But when she sees you walk into that room, her eyebrows perk up and her eyes sparkle. She's learned to blow kisses. That little face is worth a 1,000 words. It just tears you right up."
The rarity of the disease and lack of medical data makes it difficult for parents of a child with Robinow Syndrome to find doctors with the knowledge to treat the medical conditions that arise.
Bryar has been in Riley's Hospital for Children in Indianapolis, twice since her birth in December. Doctors tackle each health obstacle as Bryar's body fights to keep her from growing up, which usually creates another set of problems they need to fix. Becky says the family is grateful the nationally acclaimed hospital is as close as it is.
"The staff is so wonderful to her," Becky said. "Nurses stop by to visit with Bryar all the time saying, 'that little face makes my day.'"
Meanwhile, the Sampson's struggle to maintain a normal family life.
Tascha stays at the hospital to learn how to maintain the medical equipment and perform specialized treatments for Bryar's health care when she returns home. Jarrod works between his trips to the hospital for Care Conferences and tries to spend quality time on the weekends with the couple's other two children. Sage, 4, and Braxton, 2, stay with Becky during the week.
"The children understand what's going on, for them this is a normal life. Sage has told me that she wishes Bryar's room was bigger so they could all stay at the hospital," she said. "They are a very strong family, but it breaks Tascha's heart that they can't all be together."
Bringing Bryar home is the family's goal.
"We've been told the first of August as a release date, but only if there are no more setbacks or other surgeries," Becky said. "When Bryar does come home someone will have to sit beside her to watch her for distress every moment, because she will be hooked up to machines and tubes."
Returning home will not end the struggle to provide around-the-clock nursing care, cover medical equipment expenses and purchase a van for Bryar's transportation.
"There is a five-year waiting list for some of the items Bryar will need," Becky said. "She will have to learn to talk again, learn how to taste things. She will never be able to lick an ice cream cone or stick out her tongue. The smallest and simplest things we take for granted, she won't be able to do."
A spaghetti dinner, raffle and silent auction will be at the Brazil American Legion post on Thursday to raise money to help cover Bryar Sampson's medical and traveling expenses. Bryar suffers from Robinow Syndrome, a rare form of dwarfism.
A savings account has also been established for the Sampson family at the Riddell National Bank. To make a donation, people may visit any teller at a bank location and request to make a deposit in the Bryar Sampson account.