Brielle is a bubbly three-year-old that has a smile that lights up a room! She laughs and giggles around everyone she meets and is well known for her fashionable bows she’s been sporting since she was born.
At two weeks old, Brielle became a patient at Primary Children’s Hospital. Brielle has Say-Barber-Biesecker-Young-Simpson (SBBYS) Syndrome which causes developmental delays and physical abnormalities.
Her diagnosis led her to endure seven surgeries which resulted in life-saving additions to her daily routine. Brielle utilizes a feeding tube to receive nutrition and is always connected to oxygen. At her monthly appointments, her favorite thing to do is play with the crinkle paper on the examination tables and smile at her beloved doctors.
Brielle’s family hopes that one day she will no longer need the machines that support her life. Their biggest goal is to see Brielle walk one day!Caregivers at Primary Children’s Hospital will work with Brielle throughout her life to provide her with the best possible chance to make those dreams a reality.
Teagun is five years old, full of energy, and always on the go! He is a true Wyoming boy who isn’t afraid to get his hands dirty. His favorite toys are trucks, motor bikes, and buses. It’s a good thing he loves anything with wheels because each week his family drives eight hours to and from Primary Children’s Hospital from their small town in Wyoming.
At three years old, Teagun was diagnosed with MPS II, also known as Hunter syndrome. His body lacks the enzymes that clean out and break down harmful sugar molecules, leading to excess build-up which interferes with his development. Teagun receives weekly infusions of artificial enzymes to break down these sugar molecules… a treatment that he will need each week for the rest of his life.
When Teagun visits the hospital, his care team makes special efforts to make him feel comfortable during his treatments. They even have a special rotation of toys ready for him as soon as he steps through the door. His mother reflects, “all of the staff truly care about us. They ask how our drive is, they interact with Teagun, and they make him feel special. This makes all the difference for his care! Now he loves going to see his nurses and enjoys the simple rewards of scrambled eggs and chocolate milk in the cafeteria when he is finished with his treatment.”
MayLee is a spunky 5-year-old who loves learning. She is in preschool and is already in the STEAM (science, technology, engineering, art, and mathematics) Club. She loves teaching others how to use technology and beating her brother in video games.
She can also tell you a lot about Neuroendocrine Cell Hypoplasia (NEHI). This rare condition affects MayLee’s lungs and makes it difficult for her to breathe. She uses an oxygen tank to sleep at night and needs to monitor her breathing closely.
MayLee loves visiting her favorite pulmonology doctors at Primary Children’s Hospital. Her regular check-ups ensure she can keep out-scoring her brother, and lets her parents breathe easy – knowing that MayLee is getting the best care. Primary Children’s Hospital is the only children’s hospital in the Intermountain West that can diagnose and provide care for a rare condition like MayLee’s.
Liam is a 2-year-old who loves anything that moves – especially planes, trains, and automobiles. He has an infectious smile and lights up a room with his presence. Liam was born with tracheoesophageal fistula - which means his esophagus did not form correctly, and his mouth and stomach were not connected. Without significant surgeries and the high acuity care of a children’s hospital, he would not have lived more than a few hours.
Liam has had more than 15 operating room procedures to reconstruct his esophagus. He has already spent more weeks in the hospital than most people will spend in a lifetime. He loves the doctors and the nurses who take care of him, and is always smiling regardless of the situation.
Liam continues to grow, and he gets better every single day. With the help of many specialists, he is learning to eat, drink, and talk like other kids his age. He is a light to his family and those around him, and is dearly loved by all who know him. Liam’s mother said, “Primary Children’s saved our son’s life. We are forever grateful for all they have done for Liam and our family. Without this amazing care, Liam would never have had the quality of life that he has now.”