Juliana’s Story



As a young girl, I enjoyed English, drama, and music in school, and was fortunate to attend a good Catholic school that taught me very good English, both written and spoken. I continued to high school, but sadly, my mum died and life changed, I rebelled, and due to peer pressure got pregnant at 18 years old, dropping out of high school in my final year.

I gave birth to a baby who I named Phoebe after my mum. Phoebe was special and I was told my daughter would die and she doesn’t have a brain, so where do we start?

It was almost impossible to see anything positive from that moment. After staying in [the] hospital for one month, both of us came home to a warm welcome of questions and accusations, the whys and what did you do— it was just too much to bear.

The fight for Phoebe’s life, health and future began. After a university student gave me a ray of hope, I gathered courage and went to the national hospital which provides free services to children under the age of 5. My hopes were dashed when all the time she went to Kenyatta Hospital, I was always told to come back after a week and the waiting list was way too long, and it would take 2 years before getting to my dear Phoebe.



So I pondered what to do. Many told me to abandon Phoebe. Since I was very young, I would probably have more children. Others told me to try traditional medicine; others just told me to pray and wait on God’s will. Yes, I prayed and did nothing for 2 weeks until a neighbor came knocking to check on me and my baby.

This neighbor had a great idea— ‘Why don’t you go to the media? Your story will be published, and it is free and you can get help.’ This is what I needed. I took a bath, cleaned my baby, and carried her in my arms and walked all the way to the Standard newspapers, which is about 5 kilometers. I did not have money for her transport.



Yes, I got help, and our story was published the following day, and 3 days later, we were both in a very expensive hospital, the Gertrude Gardens Children’s Hospital Nairobi. The surgical procedures of shunting and closure of the back were done as charity.

As one year passed, we celebrated a birthday that would see many more birthdays. But, Phoebe could not stand or crawl. Another long journey began in trying to understand Phoebe’s condition and therapy. This took 3 years but absolutely nothing happened, until we met Dr. Bransford at one of the Bethany Kids outreaches. I truly had so many questions and my newfound friend. He tried to answer them as best as he could. So, I learned about the Bethany Crippled Children’s Center at Kijabe and I was fully equipped with the right info about my darling daughter.



I went home began educating my community. I was so confident I had the right information, and my backup was Dr. Bransford who was always a phone call away. After visiting all the maternity hospitals in Nairobi, advising the management on where to refer mothers who have given birth to children with any kind of birth defect, a support group of parents was formed which we named SHAK –Spina bifida and Hydrocephalus Association of Kenya. It began in Nairobi, and has now spread across Kenya with 13 chapters in existence.

My Phoebe was now doing so well, and is able to stand with braces and a walker, and I learned about bowel and bladder management, so soon she was in school. Amen!!
After selling some earrings I used to make, I saved enough funds to get me back to high school.

Ten years after giving birth to Phoebe, I would sit for my final exam. I studied in a record 7 months and was ready for my final KCSE- Kenya Certificate for Secondary Education, one of the toughest exams in Kenya. I made it! God saw me through, and I passed and went on to study community development and project management. I graduated with a diploma, majoring in disabilities, women and youth, all the while still pushing the SHAK agendas and even planning workshops for the International Federation for Spina Bifida and Hydrocephalus.



After my graduation, I had no job and life was very very hard. I kept making earrings, but had no market, so we did not have money. I would say I clearly understand the saying “hand to mouth.” I did odd jobs— I cleaned people’s homes, ironed, cleaned clothes, sold secondhand clothes, became a babysitter, learned how to braid hair, and became a dressmaker. Finally, I stopped all this hustling, and I went to volunteer at Compassion International for 2 years without pay. I was faithful to SHAK, just as I was faithful to my daughter’s care.

Though we shared a beautiful relationship with Phoebe’s dad, it was a very sad breakup that still hurts many years later. We tried to work it out, but still nothing. This was due to pressure from my family, and I just got tired of all this. When we got back together, I got pregnant and had my son Joshua. I was to go back to where I began; the struggles with 2 children without a job and all alone again because this guy left to be with his wife. I felt cheated and somehow silly and girlish to give in to him. Anyway, the future has given me more courage to keep fighting for my children. I love my Phoebe and my Joshua very much.

I waited eight long and very tough years until I got my first paying job. When Pierre [Mertens, of IF] visited, he had hoped to meet my husband. He knew I had a baby boy since I missed one of the IF workshops. But I was a single mum again. It was then that he tearfully asked me to run the guesthouse project, since I had my diploma in project management. This was so huge for me, but Pierre had so much faith and hope in me. It all happened in a flash in 2013, when I was moved from my tiny little house in a slum where I was staying with my children and my brother. A new journey began.



At the guesthouse, I do the following:

• Prepare annual budgets and annual reports

Keep records on the number of parents coming and going from the guesthouse

• Keep all records of the House of Hope (i.e., receipts, banks slips, bank statements and invoices)

• Communicate with donors to IF, ChildHelp on behalf of House of Hope

• Counsel and train parents on CIC, lifelong care, bowel management, skin care, etc.

• Cook, clean, go to the market, feed the chickens, do some gardening

• Visit the neuro wards once a week to encourage parents at the Bethany Kids

• At SHAK Nairobi, I plan all meetings, facilitate trainings for both parents and youth, I fundraise for all our annual publicity events like the world spina bifida and hydrocephalus day, and world disability day, and I prepare the annual calendar of activities and report all these to IF and to all our partners and all Friends of SHAK Nairobi.

• At SHAK National which is now the umbrella organization of the existing and upcoming SHAK chapters; I do the following:

• Communicate with donors IF, ChildHelp on behalf of SHAKN

Prepare budgets for support group meetings, administration, youth meetings, board meetings, AGM

• Work on reports on support group meetings, administration, youth meetings, board meetings, AGM

• Represent SHAKN in different platforms i.e. workshops, networking with other orgs that can be of help to SHAKN

• Take minutes during all meetings; board meetings and general meetings

• Work on proposals (e.g,. the NCPWD and IF grants)

• I keep all records of SHAKN i.e. receipts, minutes, banks slips, bank statements invoices, etc.

• Plan all meetings at SHAKN i.e. board meetings, executive meetings, AGM

• Participate in the BK outreaches

One may wonder how I make it to achieve all this alone. I have a circle of wonderful parents and youth who are always willing to help whenever I delegate duties to any of them; though I am always in planning, which again, is never easy.

My dream is to see my Phoebe complete school and graduate in a course she loves, for my son Josh to complete school and graduate in a course he loves, and for me to go back to college and earn a degree and work wholeheartedly for SHAK.
That’s much about me and my work.

My Phoebe, my one true blessing who has given me a true purpose in this life, may you live long my darling daughter.

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