May 7, 2024



‘I am part of spina bifida statistics’

(Note: This first-person story is provided by Pauline Luba, a final-year, undergraduate student in Uganda Christian University’s School of Journalism, Media and Communication. She is one of three interns writing for Uganda Partners. As she prepares to receive her bachelor’s degree this October, one of her next steps is helping others who, like her, have spina bifida. In late April, she launched a web site focused on that goal.)

By Pauline Luba
Born in May of 2002, I was the last of four children of a housewife and engineer. They were elated to bring another healthy baby into the world – at least for the first five months.

At six months, my mother noticed a peculiar swelling on the lower part of my tiny back. It quickly grew into a huge sac and prompted a rush to the hospital. Following tests, the doctor determined I had spina bifida, a birth defect in which the spine and spinal cord don’t form properly.  The National Institutes of Health reports up to 10 of every 1,000 babies have it. An estimated 1,400 children are born with spina bifida annually in Uganda.

Spina bifida is a condition in which a spinal cord fails to develop properly. One of two things happens: 1) a large sac develops; or 2) a deep opening occurs where the spine should be. The types are myelomeningocele, meningocele and occulta.

Myelomeningocele, which is the most serious spina bifida type, has a sack of fluid coming through an opening in the back. Part of the spinal cord and nerves are damaged in this sac. Most people with this type lose feeling in their legs, cannot use the bathroom and are generally faced with disability for life.

Meningocele is just a sac in the back with fluid and no part of the spinal cord. However, it may have some nerves and may lead to minor disabilities in one’s life.

Occulta is best described as where the gap in the spine is so small and underdeveloped that it goes undetected until late childhood or early adulthood. Unlike other types, occulta does not carry any disabilities or issues for the victims. Scientists theorise that it may be caused by genetics or environment but it needs to be studied further. 

I have meningocele. I am part of spina

Pauline as a baby after surgery
Pauline as a baby after surgery

bifida statistics. This, then, is not my full story, but rather a fraction of my obstacles punctuated with frustrations, learning and hope through the encouragement of God and His people.

At age six months, the sac in my back was successfully removed, but nerve damage occurred either from spina bifida or from the surgery itself. My mother blamed the surgeon.

My nerve damage caused issues in my left leg. It became weak and smaller in size than my right. There was a note of paralysis in part of my foot and toes. Doctor visits both in Kenya and Uganda were part of my childhood. Medical professionals said I was spina bifida-free with related or unrelated muscle atrophy best alleviated with exercise and physiotherapy, the latter of which was outside my family budget.

I was often bullied by my peers for being the girl whose legs were “two different sizes.” 

Still vivid in my memory is this childhood ridicule. One girl laughed loudly, pointing at my legs each time I stood up and walked to see the timetable at the front of the class. At the library, where students were required to remove shoes to enter, I was mocked again as classmates saw how I had tissue stuffed in mine to help them fit. I can still hear the glee from boys and girls when once I fell from the imbalance of an atrophied leg and even more with kids wrapping index fingers and thumbs around my lower leg to point out the small size. 

Pauline, left, growing up with two older sisters.
Pauline, left, growing up with two older sisters.

School-required dresses (vs. pants) for girls made my disability more obvious.

I developed a dislike for being touched, especially on my leg, and often isolated myself from other kids. At home, I cried a lot and sometimes pretended to be sick to avoid school. 

This took a toll on me, mentally, emotionally and spiritually.

Teasing and insensitive comments follow me even now as a young adult. Acquaintances and random people ask what happened to my leg. Some have genuine curiosity, whereas others laugh. 

I found myself asking God why. 

Why do I look different?  Why can’t I have equally sized-legs like everybody else? Why am I sick more than others?  While I did fake sickness occasionally, other times I was genuinely battling malaria or sinusitis or allergies to the cold. 

I felt I was a burden to my family. 

Throughout my self-isolation as a child, books were my friends. Books offered a beautiful escape and provided a deeper understanding of many things. When I wasn’t reading, I also started seeing the value in all people, regardless of disability.

One instance of this was in mid 2023, when Uganda Partners assigned me a story on a swimmer living with a disability at the university. Even before the story was written my interest peaked. The student I was meant to interview had lost his leg in an accident at age eight. 

Hearing the young man recount his tale of pain, suffering, rejuvenation and finding himself in swimming has stuck with me to this very day. His explanation about how he thought of nothing when he was in the water felt similar to how I thought of nothing when I read. Even though I was interviewing him that day, he took the wheel on teaching me a very important lesson on perspective and achieving what you want – regardless of what they world may think of you.

Now, as a student soon to receive my bachelor’s degree from Uganda Christian University, I can look back to find some silver linings that made me stronger, smarter and more sensitive to the differences of others. 

While books were my friends, God was my bigger friend. He was there to catch my tears, answer my questions, and encourage me. 

I am today selective about acquaintances, fostering genuine connections and friendships. 

One difficult situation I overcame was when I had to stand in front of an assembly at O’ level as a prefect and give a speech in my skirt, trying hard not to think about everyone judging me. To date, I have won speech competitions. To this, I mostly thank my older sisters, who believed in me and encouraged me.

Belief in myself moves me now to set up a non-profit which seeks to raise awareness about spina bifida, fund surgeries of patients, offer aid in their areas and so much more. It goes by the name of Kore – a pronunciation play on the word “core,” referring to the spine and how it’s one of the “core” body parts.

Kore community-based organization officially launched its website and social media in late April 2024. It’s found at My family and close friends are elated with the organization, but more so with the decision to begin this project considering my personal experience. 

I am not the most connected, wealthy or professional person in this country, but I am hopeful that my experience will drive this organization to its goal. I want to see more awareness about this disease, pregnant women taking the measures to protect their babies against it, children growing up without its associated stigma and combating the associated mental, social and physical challenges. I hope to assemble a team with so much creativity, that we don’t do things the normal way. 

And most of all, I hope to instill an essence of God into the hearts of all we touch. Without Him, I would not be here today.

I knew of Him, but once I started to foster a deeper relationship with Him, that was the true beginning of my life.  I was born with something I did not ask for, but I will not let it interfere with the dreams I have for myself. 

I want people with a similar story to read mine and know they are not alone. In my testimony to come, I hope to continue sharing to prove that no matter the disease, one’s life can still be fruitful and joyous.


North American university program marks 20th year at UCU

Story By Nathan Simbilyabo and Bena Nekesa

Photos, Video by Nathan Simbilyabo

In 2004, Mark and Abby Bartels embarked on a journey to create a unique educational experience for students from Christian colleges and universities in North America. What started as the Uganda Studies Program (USP) at Uganda Christian University (UCU) has now blossomed into a 20-year legacy of cultural exchange and academic learning.

“We learned early that relationships would be the key to the success of the program,” said Mark Bartels, now executive director of a USA-based nonprofit, Uganda Partners. “Beyond the essential rapport with the Council for Christian Colleges & Universities (CCCU) and UCU was that the program provided relationships with other students, host families, faculty members and supervisors – primarily Ugandans.”

Now living in Pennsylvania, Mark and Abby, who had USP founding roles of coordinator and assistant coordinator, respectively, spent 10 years at UCU, working, living and raising their three children there.  Both are graduates of Wheaton (Illinois) College, which is one of more than 100 higher education institutions under the CCCU umbrella. 

When the couple launched USP 20 years ago, Abby’s father, the Rev. Dr. Stephen Noll, was UCU’s Vice Chancellor. 

According to Mark, CCCU had other programs designed with academics and home stays  in Russia, China, Egypt, Costa Rica and England. One different distinction was that USP was the first CCCU program to be closely partnered and embedded within a Christian university. A key UCU component was alignment with the Honors College, coordinated then by the Rev. Canon Dr. Sam Opol, assisted by his wife, Margaret. 

Today, the USP is a program with a focus on Social work, Global Health, and Interdisciplinary studies, offering students a wide range of educational opportunities. Rachel Robinson, the program director for the past 10 years,  leaves her post in June. The director oversees the day-to-day operation and the transformative experience it provides for students.

About the USP Program at UCU

When applying for the Uganda Studies Program at UCU, students choose from one of the following academic concentrations: Social Work, Global Health, or Interdisciplinary, and engage in internships at different organizations depending on their area of study.

The program also creates a different learning experience for students in Uganda and Africa as a whole, arranging for a student to be placed with a host family on arrival, and during the trip they stay in villages for a week in  which a student can learn what academics cannot give. 

During one of two semesters known at UCU as Advent/Fall and Spring/Easter Semester, they do a homestay in Kapchorwa or Serere. At the end of a semester over the years, they make a final study trip to Northern Uganda or Rwanda and finish with a debrief in Entebbe before returning to North America.

The USP since its inception boasts of up to 970 alumni including 120 males and the rest females, who have since become global alumni ambassadors of UCU and sponsors in partnership with UCU. For over two decades of USP existence, the program has had over 93 American and Ugandan staff members, including a coordinator, program assistant and a homestay coordinator.

Rachel’s Journey with USP

On April 10, the USP celebrated two major milestones in its history: first, its 20th anniversary since 2004; and second, honoring Rachel Robinson for her leadership as director of the Program. Outgoing students also bade farewell. 

USP director, Rachel Robinson, left, is leaving her leadership position that will be assumed by Emily Entsminger, right, on June 1.
USP director, Rachel Robinson, left, is leaving her leadership position that will be assumed by Emily Entsminger, right, on June 1.

Rachel’s leadership journey began in 2014 when Mark, now executive director of UCU Partners, moved back to the USA. Her tenure with USP started in 2010 while she was serving as the Coordinator of the Intercultural Ministry Mission Emphasis (IMME). Effective June 1, the USP lead position will be assumed by Emily Entsminger, a USP alum who has been serving as a Student  Life Coordinator.

“I have many memories – both good and challenging – from the years in the role of the directorate,” Rachel said. “One of the difficult memories is the bomb attack that happened in one of the universities in Kenya in 2015.” The Garissa University College attack in Kenya took place in April 2015 when gunmen stormed the institution, massacring 148 and injuring 79 more people.

“It was a serious crisis that happened because from that we were called to evacuate our students before the end of their semester,” she said. “That semester we had farewell without students.”

USP director, Rachel Robinson, center, participates in a recent cake cutting event on UCU Mukono campus.
USP director, Rachel Robinson, center, participates in a recent cake cutting event on UCU Mukono campus.

One of  Racheal’s highlights during her service under USP were trips to Rwanda where she and USP cohorts interacted with a Rwandese national with Christian Action for Reconciliation and Social Assistance (CARSA), Christophe Mbonyingabo, who told them about the Rwandese genocide of 1994 and reconciliation and recovery that was happening.

When asked about her next step, Rachel expressed uncertainty but asserted “trust in God” both for her and USP.

“Whenever there is a success, mostly the directors and leaders get the praise, while I didn’t do it alone and mostly every time there are people in the background working overtime,” she said. “I am undoubtedly confident with the coming director of USP that even if it doesn’t go well or it goes well, she will do well.” 

What others say

The April celebration was attended by many guests including the host families, homestay families, roommates, former USP staff including the former Vice Chancellor Rev. Canon Dr. John Senyonyi, Deputy Vice Chancellor Finance and Administration David Mugawe and University Chaplain Rev. Canon Paul Wasswa Ssembiro. 

“I have seen this program grow and go through different seasons, both difficult and good, for example during COVID-19 and the attack on the university in Kenya in 2015,” recalled Dr. Senyonyi during his speech. “But the outgoing director, with whom I joined UCU almost at the same time, has worked so hard, so I say, Rachel, you must come back because we still need you.” 

David Mugawe, Deputy Vice Chancellor Finance and Administration, and outgoing USP director, Rachel Robinson, with recognition plaque.
David Mugawe, Deputy Vice Chancellor Finance and Administration, and outgoing USP director, Rachel Robinson, with recognition plaque.

The UCU Directorate of Student Affairs, Pamela Tumwebaze, added appreciation to Rachel “as a colleague and close friend.”

“Rachel had become like a sister to me,” Pamela said. “I will miss her. I wish I could convince her to stay, and I do not know what word I will use.”

During his speech, Mugawe presented Rachel with an award in recognition of her good work and thanked her on behalf of the university community.

The ceremony concluded with the cutting of cake, a meal, a touching slideshow of memories and well-wishes from friends, and officially closed with prayer by the UCU Chaplain.

Another commemoration with an audience of USP alumni  is planned in July in the USA state of Colorado. 

As USP marks its 20th anniversary and its impact, it remains committed to providing students with immersive educational experiences that broaden their horizons and shape their worldview. Most importantly, it continues to inspire students to understand and appreciate other cultures.