The Fight for My Nephew’s Life with Spina Bifida

About the Book

When my nephew was diagnosed with Spina Bifida at birth in Nairobi, Kenya, his loving parents knew little to almost nothing about this mysterious ailment. This lack of the underlying condition made it difficult for them or other close family members to seek specialized care, rendering any early interventions out of question and dimmed his future treatments. Innocently, his parents assumed that the condition that he has would disappear or get treated with passing months or even years. Things did not improve and that led them to inform other family members, including myself, their beloved sister. Upon hearing that the boy’s health was not progressing as expected, I decided to visit Nairobi and made firsthand observations. I was convinced beyond doubt that moving Little Deng to the US would be best. The prospect that he could have face severe challenges, even death, was both tormenting and motivating. Thanks God that him and his father both flew into Salt Lake City, Utah, on December 22, 2014. His loving family, including grandmother, uncles and aunty were always ready to see his treatment through, with zeal and passion. Treatments meant conducting catheterization by inserting a small tube into his private area four times, every four hours per day, administrating medication twice per day for bladder control infection, watching for hydrocephalus - shunt malfunctions almost every day because it could lead to death if not properly caught on time, checking braces on his feet for any skin redness, adjusting walker and wheelchair, even carrying him around when he struggled, countless Emergency Room (RM) visits, long hours every six months visit to Spina Bifida Clinic, attending constant Physical and Occupation therapist twice per week, and performing bowl movement program every day, every evening. Little Deng is a blessing to me and our family. As a first-time caregiver, when Little Deng is out for school and other activities, I would be stressed and depressed throughout the day given his condition and how he may do outside there. He is a stronger boy, considering what he faces. While facing all the challenges, Little Deng is a fighter. He survived spina bifida without any support and hearing from his biological mother for the last six years following his treatments in Utah. This has led him to travel back to Nairobi, Kenya, for family visit and met with his family, especially his two siblings who were born after he has been relocated to Utah. He is also a determined boy and who dreams big against all odds. Although Little Deng knew he might not physically walk, he has a big dream of becoming an NBA star and be the next Donavan Mitchell. This passion brought him to the Utah Jazz Arena where he met face-to-face with Donavan. Received his shoes and got interviewed on NBA All Star. He was enrolled in a Utah Jazz Jr. Wheelchair basketball and summer adaptive program at the Recreation Adoptive Center located in Midvale, Utah. The journey has just begun but fears and worries remind the same. All the same, Little Deng was and remains blessing to our family here in Salt Lake City and in Africa where his biological parents reside.

About the Author

Susan (Suzie) Akok holds a Master degree in Public Health at Westminster College and a Bachelor of Science in Sociology from the University of Utah located in Salt Lake City, Utah. Suzie hopes to pursue her Ph.D. in Global Health one day. Suzie is originally a refugee from South Sudan and had lived in a number of countries in East Africa, including Ethiopia, Uganda, and Kenya. A U.S citizen, she currently lives in Salt Lake City. As a sojourner and community organizer, Suzie has several experiences in community services. She is currently working at the Utah Public Health Association – Community Health Worker Section as an Outreach and Partnership Coordinator for underserved and underrepresented population in the state of Utah. She has also worked abroad, Nairobi, Kenya and nearby rural areas as a Public Health Outreach Volunteer strengthening Maternal and Child Health Program. Broadly, Suzie is compassionate about making difference in people lives. In this connection, she founded a non-profit organization in 2018 called Refugee Action for Family Health (RAFH). The mission of RAFH is to improve and promote refugees’ community health and well-being through resource mobilization, personnel connection, health education, and cultural preservation and exchange in Salt Lake City, Utah and nearby areas. At the RAFH, Suzie and colleagues envision a family health that improves community health, provides knowledge, provides tools and mobilizes resources, imparts health education, and reduces social isolation that causes depression. During the Novel Coronavirus-19 (COVID-19) pandemic, Suzie has initiated two projects to help refugees’ youth and families fight COVID-19 pandemic. As a result, she has made more than 100 reusable masks to prevent the spread of COVID-19 among refugees’ youth and families. Second, she provided 5 new tables to support youths’ remotely learning so they can successfully complete their homework online without missing any assignments and finally, she reached out to vulnerable households to share information about the virus and where to get help from local resource persons and state agencies.