This story is based on three principal questions answered in most stories: What used to be? What happened to make things different? What is now? There are many elements that make this sound like a work of fiction. It is not. This is a true story; a story of love, extreme obstacles, triumph, friendship, family, tragedy and recovery. This is the story of a single dad and his family; a family who has experienced more than most would experience in several lifetimes.
Bloemfontein, South Africa- 1990
Stefanus (Fanus) Smith and Mariette Roelofse were carefree 2nd year college studentsat the University of the Orange Free State. Fanus was a business major and Mariettewas studying occupational therapy. Fanus and Mariette met at a dance that Fanus and his friends “sponsored” because the university dance wasn’t up to par. Fanus laughs, “My friends and I went to the dance looking for girls and it was lame. The dance hall was next to our dorm, so we decided to throw our own party. A lot of girls came to ‘our dance’ and Mariette was one of the girls. We danced every single dance that night.” As the famous cliché states, “the rest is history.”
January 2, 1993– June 1995
After graduating, the couple married. When Fanus and Mariette married, did they realize that their lives would be the perfect representation of the vows they spoke to one another that day? Did they know that they would love each other through great times and times that would prove to be unimaginable? Did they know the gravity of sickness and the blessings of good health?
After working on Fanus’ dad’s farm for a couple of years, Mariette signed with a company that gave them the opportunity to travel to the United States for two years as she worked as an occupational therapist in various locations on the East Coast. “We thought it was a great opportunity to see another country. I actually applied for my passport in 1992 because I just knew someday I was going to go somewhere.”
In 2006, the couple would become United States citizens.
“We went back to South Africa for ten weeks. While there, Mariette’s mom passed away after a five-year battle with ovarian cancer. It was a thankful blessing that we were home with our family.” Even though Mariette watched her mom suffer from cancer, the possibility of this horrific disease affecting her body was not on the radar. “We were so young. It didn’t even cross our minds,” Fanus shares.
The couple returned to the United States because Mariette had an assignment to finish. Fanus explains, “At that point we knew that it was going to be longer than two years. We realized there was more opportunity in America than South Africa with employment, raising kids and giving them a better future.”
While living in Kane, Pennsylvania, the couple experienced such pain when Mariette suffered two miscarriages in a row. These adversities weren’t lasting for the couple.Mariette and Fanus handled everything that transpired with dignity and grace. Despite the hardships that began in 1997, the couple believed firmly that God had a plan.Mariette finally became pregnant with their first daughter, Aleesha.
May 3, 1998
Mariette and Fanus welcomed their first daughter Aleesha to the world. “The moment she was born, Aleesha had her first seizure. She was immediately transported by ambulance to the NCIU at DuBois Regional Medical Center where she spent ten days having numerous seizures.” As new, young parents with family far away, this was a difficult experience. “We had to fight for care and had medical bills piling up, but we made it happen. We knew we had a big mountain to climb and Aleesha was not going to get better. She had developmental and neurological issues. The neurological issues caused brain damage which in turn caused physical limitations. At some points she was having 30 seizures a day and was on every possible seizure medication. ”
As a full–time working couple they realized quickly that, “We would need to work as a team to give Aleesha the best care possible. I would cook and Mariette would take care of Aleesha. We had full–time nursing care during the day and would rotate between the two of us the evening shift and night shift. Because she was aspirating, she would turn blue due to poor lung function.”
Aleesha was first diagnosed around a year old with Cornelia de Lange Syndrome by a doctor at the Children’s Hospital of Pittsburgh. “This original diagnosis gave us hope. A lot of these kids function somewhat okay, but she never got out of that funk.”
After a third miscarriage, Fanus and Mariette were so grateful for their second daughter, Karla’s arrival. Fanus recalls, “We knew that we wanted another child, but we were nervous. We remembered vividly that Aleesha wasn’t crying at birth. The sound of Karla crying immediately after birth was such a joyful noise. We knew instantly that Karla was healthy. All the things that Aleesha couldn’t do, Karla could do. Karla brought a new dimension to our house. For four years we were stuck in the house. Our focus was no longer all about Aleesha. There was this new little person who needed some attention too. Aleesha and Karla connected as sisters. Aleesha wouldn’t make eye contact with a lot of people, but she would focus on Karla and the two would look at one another and laugh.”
The Make- A- Wish Foundation granted the Smiths their wish to return to South Africa with a nurse to care for Aleesha so they could introduce the entire family to their girls.This was the first and only time the entire family would meet Aleesha.
Fanus explains that also during that year, “We did research and realized we wanted to be closer to The Children’s Hospital of Philadelphia. That is why we moved to Collegeville. At CHOP, Aleesha (5) was finally diagnosed with a metabolic disorder. In retrospect, Mariette reflected on her pregnancy with Aleesha and felt she was having seizures in utero because of the types of movements Mariette felt.”
Fanus shares, “We continued to have hope and maybe more optimism than was realistic. Over time, we saw that her lungs were getting worse. Every winter she would get sick and every winter the recovery would get worse. Even though she was re-diagnosed with something that made more sense, she was not getting better. She declined from that time on.”
In the spring, Fanus traveled to South Africa. “On April 1, my little sister, who was 38, was killed in a car accident. She was ten weeks pregnant. While I was in South Africa for the funeral, Aleesha got really sick. The Palliative care team told Mariette thatAleesha was getting worse and suggested she call me. I arrived home on Wednesday and on Saturday, April 16 she passed away.”
When asked how they recovered, Fanus shares, “There is no textbook way on how to deal with grief. For the first year, we just existed. It was probably a good three or four years before I heard Mariette laughing out of her stomach, the way she always laughed. It is such a vivid memory. That was the moment that I realized there is still hope and we were moving forward one small step at a time. It is still tough to think about, but at least we could be happy again.”
Mariette and Fanus wanted to add to their family and actively began pursuing adoption and navigating the multistep system. “We decided to adopt from China and began the process. In late 2008, Mariette was diagnosed with ovarian cancer and we were thrown off the adoption program in the beginning of 2009. Mariette underwent chemotherapy and radiation. She stayed very positive, but all of this was a blow.”
In September of 2009, Fanus’ dad passed away and his half-sisters, Jacqueline and Marguerete, were now considered orphans. “My dad was sick for a while and Mariette had said well before his passing that if anything happened to my Dad, we were going to adopt the girls. It was something she brought up. Mariette felt led by God and we felt that we needed to respond. When you take a leap of faith you are not doing it alone; God is with you. ”
February 14, 2010
Jacqueline (11) and Marguerete (9) landed in Washington, DC on Valentine’s Day, not speaking any English. “They were like deer in headlights when they came here. They were grieving their parents, the food was different, the culture was different, everythingwas different for them. Looking back, they know that being in the United States has given them a much better life. They remember that life in South Africa was not easy.”Fanus and Mariette had endless love for the girls from day one and Karla was overjoyed to have instant sisters.
Life here would prove to have its difficulties too. Mariette, who was in remission, soon found out that the cancer returned and the battle was getting harder to fight. “In the short time Mariette spent with the girls, she instilled awesome characteristics, spent time with them and treated them all the same, as if they were all her own kids. She had a phenomenal bond with them.”
In January, Mariette and Fanus went on vacation to spend some alone time. “We were on a cruise and that is when she started feeling really badly. I just knew that this was the beginning of the end, but Mariette had a fighting spirit. She refused to admit that she was going to die. We never even had the conversation. Even with all the odds against her, she was determined to fight until the end.”
Mariette lost her life on August 17, 2013. At her funeral, the pastor of her church shared that he read Mariette’s prayer journal and how she specifically prayed for so many people. This sad day filled so many with joy because of the life she lived.
As a widower, Fanus shares what it was like to now be raising three girls on his own. “A lot of things go through your head. Your world comes to a halt, but you have to figure out how to have a job and be responsible for your kids. I fell apart a few times a week, but the responsibility kept me on track. We have great friends who have helped us tremendously. Steve and Terri Smith, along with their four children, welcomed my girls with open arms and helped us over the years. Because of them, we survived.”
Sheila Van Wicklen, Mariette’s best friend, is passionate with keeping the memory of Mariette alive. To honor the life she lived and the lives she touched, every year Sheila organizes an Annual Ovarian Cancer Walk. The event that was held for the 5th year on April 22, 2018, has music, raffle baskets, hot dogs, snacks and beverages. The proceeds of the walk benefit the Sandy Rollman Ovarian Cancer Foundation.
Life after Loss
The first few years were very difficult. “I knew that the girls needed their mom. There was an obvious void. We are fortunate that Terri, Steve and their kids helped to fill that void. Even though no one can replace their mother, they stepped in big time. I am so thankful for this because this is something I could not and cannot do on my own.”
When asked what his biggest fear is, he immediately thinks of his girls. “I want my girls to be happy and successful. I always doubt myself as a parent and wonder if I am doing what I am supposed to be doing. Thankfully though, all four of us are extremely close.”
Jacqueline received an academic scholarship and is in her first year, majoring in nursing at Bloomsburg University. Marguerete is a junior at Spring-Ford High School and Karla is a sophomore at Spring-Ford.
This story has come full circle for Fanus. He explains, “It is interesting how you get used to a certain lifestyle. When trauma happens, we figure it out and move past it as best we can. The girls and I work together because I can’t do it myself. We keep it moving and it isn’t always pretty, but we are a good team.”
His life is full of events that involved taking a leap of faith. From leaving his father’s farm, moving to the United States and adopting his half-sisters, he proves that you can find joy and purpose in challenging situations. He has never lost his faith through all he has endured over the past 20 years. He shares, “There are a lot of examples in the Bible where a lot of people lost a lot of things and I think if you understand what the Bible is really saying, there really is no other way. What else do we have? When this world is all gone God is still going to be here. He was here before us. He knows already what is going to happen.”
Fanus will never forget Mariette. He questions, “How can you forget a person who was part of your life for 25 years?” He is not moving on, but has moved forward. Fanus met a wonderful woman, Peggy Stohler, through mutual friends in 2015. She too lost her spouse and they are great support for one another. He shares, “Taking your time in mourning, being open minded and moving forward has been the best thing. We all deserve to be happy. Peggy and I can both make references to our spouses because they are part of who we were and are. When you meet someone new that doesn’t mean you have to completely shut the door of the past.”
Update- FANUS AND PEGGY ARE ENGAGED!! I am so happy for this great couple!!