Fly High Niam, My SONshine

Niam (Nee-um) Edward Carey was born Oct. 3, 2018, with Spinocerebellar Ataxia Type 7 (SCA7), a very rare neurodegenerative disease. Niam began showing symptoms of his condition at the age of 2 months. He received genetic testing at 4 months, and was officially diagnosed with SCA7 at 8 months. During this time Niam's symptoms began to rapidly progress. SCA7 is the result of genetic defects that lead to impairment of specific nerve fibers carrying messages to and from the brain, resulting in degeneration of the coordination center of the brain. The earlier the onset, the faster the disease progresses. Consequently, Niam was determined to be legally blind with 10 percent of vision in both eyes, he lost the ability to sit up, the ability to do tummy time,  and the ability to hold his head up unsupported. He had low muscle tone due to his condition which prevented him from ever learning to crawl, stand, or walk. His disease effected all of his gross motor skills, he also never learned to truly speak. Niam eventually lost the ability to feed by mouth due to his lack of throat muscle coordination, and he had a feeding tube placed.

On Sept. 30, 2019, Niam became sick with an upper respiratory infection and was admitted to CHOP where he spent nearly 2 months in the hospital. I took a leave from work and lived off of my savings never leaving his side, while family looked after his older brother. During his stay his disease continued to progress quickly, his heart and liver became enlarged, he was diagnosed with stage 3 chronic kidney disease, and he became anemic. He received 4 blood transfusions, 2 albumin transfusions, and a number of tests throughout his stay. Niam started to develop fluid in his lungs for unknown reasons, which resulted in him being escalated to the Pediatric Intensive Care Unit (PICU). He was put on a number of medications and had a breathing tube inserted, but nothing worked to remove the fluid and optimize his respiratory issues. 

On Nov. 27, 2019, Niam's breathing tube was removed because he had multiorgan failure (heart, lungs, liver, & kidneys) and unfortunately, there is no cure or treatment options for this very rare disease. Ultimately, despite his doctors many efforts Niam succumed  to the complications of SCA7 on Nov. 28, 2019 at 8:27am. Although Niam lived a hard life that he did not deserve, he always was a happy, affectionate, and loving child who maintained a smile through it all. Niam's life was uninsured due to his preexisiting condition and I have exhausted my savings in order to support my children emtionally and financially. These proceeds will enable us to give Niam the funeral service and burial that he deserves, in addition to helping me maitain until I am able to return to work. No donation is too small, any and everything is appreciated. Niam leaves behind a 4-year-old brother (Dahron Jr.), his parents (Nidara & Dahron), and a host of family who are LOST without him. Thank you for taking the time to read Niam's story, we appreciate it <3