Sydney, now three-years-old, was born happy and healthy. It wasn’t until after she turned one that she began showing symptoms of a muscular disorder. Sydney and her family spent several months traveling to various hospitals, looking for the cause of her disorder. It wasn’t until they visited The Children's Hospital of Philadelphia where they received her final diagnosis of Infantile Neuroaxonal Dystrophy (INAD).  

INAD is a terminal progressive neurological disorder that affects the part of the nerve cell that carries messages from the brain to other parts of the body. The average life span for people diagnosed with INAD is 5-10 years old.  

“The vast amount of energy the disease requires has made us take steps back in our careers but has also given us everything we didn't know we needed,” said Samantha, Sydney’s mother. “Like slowing down to notice every little detail we will shortly be without.” 

Taking time to cherish memories with their family is something Samantha and Adison look forward to. One of those memories includes spending time in the new hot tub Sydney received as her wish.

Originally, Sydney had wished to go to Disneyland with her family, but due to the public health concerns surrounding COVID-19, they decided to change the wish to something Sydney could enjoy immediately. According to her parents, Sydney has always enjoyed being around water and heated water helps her relax and be more comfortable.  

“Our family has gone through some unimaginable heartache over the past year, so being flexible is all we currently know,” said Samantha. “We think this was actually the wish that was meant to be all along. It's the gift that keeps on giving.” 

Wishes are an important part of a child’s medical journey and can help improve a child’s quality of life and produce better health outcomes. Now more than ever, hope and wishes are essential.  

“Make-A-Wish Nebraska is a huge reason our baby will live the rest of her life to the fullest by giving her something we, as her parents, couldn't,” said Samantha. “Make-A-Wish will be the reason for kids like Sydney's culminating smiles. THANK YOU!”