It is refreshingly amazing to meet a young woman of substance, who despite facing a devastating disease; has achieved remarkable success.
She is a sickle cell disease (SCD) warrior, global activist, a pharmacist and Miss Africa USA. Raise your glasses to Dr Marie Ojiambo, an extra ordinary soul who deserves heaps of accolades. Just like the little David in the Bible who faced the mighty Goliath with a sling and crushed him, the petite woman is facing an equally intimidating giant and she is determined to slay it.
“I was born and raised with sickle cell disease and ever since I was an infant I grew up knowing I was always unwell,” she opens up during the interview. Even though her journey growing up was filled with a series of crisis moments, she resolved from an early age that sickle cell would not define her life or stop her from achieving her dreams.
“There’s this myth that people with sickle cell never live to see their 18th birthday. I wanted to erase that lie. I am determined to live long, achieve all my dreams and fulfill my God-given purpose,” says the doctor who has a degree in Pharmacy from the University of Nairobi and is pursuing a Masters in Industrial Pharmacy at St John’s University in Queens, New York majoring in drug research. The determination and resilience in Marie to succeed is so great, one is bound to wonder what drives her to want such greatness. Well Marie, 27, comes from a family of academic giants, she has no reason to be a dwarf in her achievements.
Pioneer cardiologist
The vivacious doctor is daughter of Amb Dr Josephine Ojiambo, the grandchild of Julia Ojiambo and grandchild of the late Prof Hillary Peter Ojiambo, the pioneer cardiologist in East and Central Africa. Her grandmother, Julia Ojiambo, was the first female assistant minister in Kenya. Marie says although she does have big shoes to fill, she is not pressured. “My family has a strong background in education and career which in turn has been instrumental to my own motivation, aspirations and passion. Having been raised in a Christian family, prayer and faith have also shaped my life,” says the Loreto Convent Valley Road old girl. So how has her journey with SCD been?
“Having being diagnosed at infancy and raised with the disease, it did not come as news to me. However, as I grew up I became aware of my body and its short comings due to the illness. My mother had to explain to me why I couldn’t do certain strenuous physical activity and why we made frequent visits to the hospital. As I grew I learnt to better cope with the disease,” she explains. So what has been her lowest moment? A month ago she experienced her first attack of acute chest syndrome. It is a form of sickle cell crisis that happens in the lungs, similar to pneumonia.
“I was in hospital for two weeks out of which I spent five days in the ICU. I was unconscious for the most part of my stay in ICU. It was a trying period and at some point I thought I wouldn’t pull through. However, I fought on with loads of prayers and encouragement from family, friends and other sickle cell warriors.”
And highest high?
“I have a laundry of high moments. Every challenge I have set and managed to complete successfully, every stereotype I have managed to break, every heart I have managed to touch and every smile I have managed to put on a fellow sickle cell warrior’s face, those are my highs.” With such intense episodes she has resolved not to focus too much on her disease instead choose to pursue education to the furthest end. Thus after her first degree, she decided to further her studies abroad, an experience which proved tumultuous as she tried to settle down.
“Being a sickler winters in the US were crazy for me. They hit me hard. New York especially tends to have extreme weather conditions with very hot summers and sub zero, snowy winters. Both these extremes of temperature are known to predispose sicklers to painful crisis episodes.” To cope and stay healthy, Marie had to learn how to layer up for the cold winters and dress lightly for the hot summers, always carrying a bottle of water to stay hydrated. But the advantage of moving abroad was the excellent medicare and the networks in the US some of who fund her projects. Additionally, moving to the US ignited her resolve to be a voice for the voiceless sicklers.
“On moving to the US, I fell into crisis in the middle of my first winter. The time spent in hospital exposed the lack of knowledge and ignorance that many had about this condition, medical personnel included. While in prayer and reflection, I felt that this gap in knowledge and awareness had to be addressed.”
Towards that end, in 2013 she enrolled for the Miss Africa USA Pageant, a humanitarian based pageant for young ladies in the Diaspora who want to give back to their communities. “I sent in my application for the pageant and chose my humanitarian platform which focused on raising awareness around Sickle Cell disease, its control and management and positive living with the disease. The pageant trail saw me honoured with the titles of Miss Kenya USA 2013 and The Peoples Princess Miss Africa USA 2013/2014.” That was her first step to achieving her God given purpose.
“The pageant I took part in had extremely intelligent young ladies from different parts of the US representing different African countries. It was an experience to make new friends, market my platform as well as build my networks.
It also presented to me an opportunity to research the state of Sickle Cell disease in Kenya so that I could better understand what needed to be done and what strategies would be most successful.” Because this was no ordinary pageantry, it instilled her some solid principles and values. “Pageantry made me more of a listener. It built my leadership and public speaking skills and bolstered my confidence,” says the self-driven lady.
People’s princess
The title of Miss Africa USA Peoples Princess was given to the girl whose humanitarian platform was widely accepted and endorsed by the public. The competition ran online and voting was done against each contestant’s profile. Marie emerged the winner with over 11,500 votes.
This part of the pageant is what made her the much celebrated face of positivity in sickle cell disease. With that door opened, she launched her dream project that same year.
“I started Sickle Strong Initiative because many sickle cell warriors and their family members from Kenya started to reach out to me for financial help, encouragement and a shoulder to cry on.” She launched it officially in Kenya in 2014 when she was on recess. Though it is barely two years old, the organisation has recorded significant success. “My candid approach on the matter has since caused many to reach out to me wanting to emulate or share their stories.
Other players are also slowly rallying behind sickle cell warriors. Her biggest achievement is being able to host and orchestrate the annual public awareness event Ongea. “Ongea is an idea that came to me in prayer. It is a platform for sickle cell warriors to speak out about the condition, share and interact. It also provides an opportunity for the warriors to engage with and challenge the government, pharmaceuticals, insurance companies, stakeholders and the public on what they are doing to improve the health care for sickle cell warriors.” The second edition was hosted on June 20 this year at the Safaricom Michael Joseph centre.
The challenges
Marie admits that running a foundation is not easy. “The first year was the hardest as there was little knowledge on the disease among the public.” Funding has also been an issue. “Fundraising and sponsor searches were much harder in the first year of running. But now we have reliable donors.”
Sickle cell aside, any lucky guy? “I prefer to keep that matter personal.” Advice to young people battling SCD? “Learn how to take care of your body and your health. You are your best doctor.”