Following an at-home accident that found Eddie Justesen in the hospital fighting to get his old life back, his wife Lara learned on day three of his stay that she was expecting another child to join their first daughter.
This pregnancy came on the heels of three miscarriages in four months. The Justesens were given a less than a 1% chance of conception by fertility specialists. On Feb. 6, 2014, they defied the odds when they welcomed Journey Celeste to the world at Castleview Hospital.
Journey was born with Tetralogy of Fallot, which is a Critical Congenital Heart Defect (CCHD), and was quickly transported via Life Flight to Primary Children’s Hospital. It was there that she was diagnosed with the tetralogy, which is also commonly known as Blue Baby Syndrome. This is a rare condition that is caused by a combination of four different heart defects that are present at birth.
The four defects are Pulmonary Valve Stenosis, Overriding Aorta, Vertical Septal Defect and Right Ventricle Hypertrophy. Along with these four defects, causing the Tetralogy of Fallot, Journey had three additional heart defects: Atrial Septal Defect, PDA, and MPA Hypoplasia. In all, she was born with seven heart defects.
Journey has experienced several cardiac procedures, including sedated echocardiograms, open heart surgery, heart catheterizations, sedated MRIs and more. She received her first artificial pulmonary heart valve last May and will require several more valve replacements throughout her life. In November, she also had her pulmonary arteries stented.
Just last year, Journey was approved to receive a wish from the Make-A-Wish Foundation. A well-known organization, the foundation grants wishes to children that have been diagnosed with life-threatening medical conditions.
The medical eligibility of those that proceed through the Make-A-Wish program is determined by a group of doctors and social workers at Primary Children’s Hospital. Last June, Journey made the trek to the Wishing Tower, located at Make-A-Wish Utah, to declare her wish.
Journey’s wish was a unique one. While children Journey’s age, which was four at the time, are oftentimes granted a trip to Disneyland, she simply desired to go to Moana’s Island.
With a love of Moana, just meeting her was not enough for Journey, who wanted the whole experience. This was approved through Make-A-Wish, though Journey had to wait for that great news. According to the Make-A-Wish guidelines, children must be at least five years of age to receive a Hawaiian travel wish trip.
Journey turned five on Feb. 6 of this year and Make-A-Wish coordinated a surprise birthday party combined with a “Wish Proclamation” party on Thursday at the Ramada in Price. There, it was revealed that sometime in April, the Justesen family will be traveling to Moana’s Island where Journey will find refuge and a break from all things medical.
A special thanks goes out to Kathy with Party Express as well as Jeanne Mares and the staff at the Ramada for their contribution to Journey’s Wish Proclamation.
“She is one tough little girl and faces a lifetime of treatment, but she is always happy and full of life,” Journey’s mother, Lara, stated.
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- Photos by Jeff Barrett
