Make-A-Wish^® Hawaii

We were deeply moved by Eliza's story of joyful resilience. "Eliza's story is a beautiful one with a lot of difficulty and a lot of challenges," said her father, Brandon.  

Eliza was born with Pfeiffer syndrome, a rare genetic condition characterized by premature fusion of certain skull bones (craniosynostosis). In Eliza's case, she faces limitations in movement due to fused joints, as well as  other complications of her condition. 

In her first year of life, she was in and out of the hospital and spent 90 days in the NICU getting a gastrostomy tube, then a tracheostomy. She had several setbacks with surgery to insert a shunt to relieve pressure on her brain. At night, she was kept on a ventilator to ensure she could breathe. She underwent a few other surgeries for her shoulders and hips that year. 

In her five years, Eliza has had 18 moderate to major surgeries, with more to follow. "By God's grace, she has been spared some of the possible effects of Pfeiffer Syndrome, and her first cranial surgery was in time to reduce pressure before any damage was done," shared Eliza's dad. 

While they'd hoped Eliza could experience Disneyworld this year, the pandemic changed their plans, and Eliza's family instead enjoyed a staycation at the Kahala Hotel & Resort on Oahu. "Eliza was welcomed by the staff in a way that touched us deeply," said her dad. Eliza and her brother were given stuffed dolphins and had the opportunity to swim with real ones in the resort's enclosed lagoon. 

"She enjoyed the beauty of the resort, the shade of the beautiful trees, the calm atmosphere, the beach, and watching the dolphins and fish," said Brandon. "The lagoon is a place where she is able to go into the water, and it has become a regular day spot for our family the past few years."

For the first three years of her life, Eliza was non-vocal, though she could sometimes make sounds and even say "papa" and "up". Then, a little over a year and a half ago, Eliza began to speak. This past year, she has learned not only to talk but to converse and even to sing.

Despite her condition, Eliza is otherwise a healthy young girl. She is not in pain does not take any medication. Her difficulties are related to her lack of motion and the consequences of her bone condition. However, Eliza needs constant supervision and requires help with many simple tasks. 

She can't lift her arms above her head, reach her mouth, catch herself falling, or set herself up. She can sit up for long periods, use an iPad and computer, play games, count to 30+, sing her alphabet, drive her powerchair, and a lot of other things. "She is very close to learning to read, which we are very excited about!" shared her dad. 

Eliza is currently starting kindergarten, and she has been thriving, according to her family. She loves to watch Mister Rogers' Neighborhood, The Andy Griffith Show, and Pinkalicious, to have books read to her – especially Pete the Cat and Amelia Bedelia, and to play with her iPad. She also loves to drive her power wheelchair and get into the water in her floating ring. She is adventurous and joyful!

Kids will probably remember Eliza's wish day for a long time. Balloons, crowns, magic wands, a cooler full of fun beach items. The kids' sunglasses were a huge hit!  A chocolate cake covered with KitKat bars made a special treat for several days for a 3-year-old!  

"Her condition has meant big changes for us, the ending of some dreams and the forming of new ones. It has brought us together very closely as a family," he shared. "She has been a blessing and inspiration to many, and she has been blessed by many who have given so much to give her a life that is characterized by joy.”