Five-year-olds are always looking forward to the next party in the neighbourhood, their birthday, candy, next school trips, new toys and clothes, favourite cartoon and getting onto the swings, among many other activities. A child at that age is meant to be creating fantasy worlds through their imaginative and dramatic routines.
It was never the case for Santalucy Fungaroh, because that is the age she developed a rare skin condition denying her the ideal childhood. It was the beginning of frequent hospital visits that came with countless surgeries.
“I have lost track of how many times I have been cut,” says the third year Makerere University student of Social Work and Social Administration . She is now 20 years old and will head into the theatre of Agha Khan Hospital in Nairobi in June to once again confront dermatomyositis, the condition that has shaped her life since 2005. Her undying love for fashion and the runway will see her catwalk today (March 7) on a sports fashion show at Fast Sports Fusion, Bugolobi in an attempt to raise funds for her looming surgery.
Meeting the mentor
As Fungaroh’s 20th birthday was approaching on June 25, last year, she drew a plan for a party.
“To me, birthdays are a big thing, it is the day I get to turn a different age since doctors said I would not live long, so every birthday must be epic however small,” says Fungaroh. Perhaps the doctors who predicted her death earlier had never seen this kind of condition with Fungaroh being the second medically registered case in Uganda since 1952. Ailing and unable to walk, sit, play, cry, voiceless and feeding through a tube, death looked imminent. Relatives went ahead to advise her parents to ship her off to the village to die after all she had become a liability with big medical expenses.
Getting out of that abyss to where she is gives her more reason to make the best out of her birthdays.
Looking good on her day topped the agenda, she needed someone to do her make-up and talked to Esther Nabukalu Shanita, a close friend about it. The name Jean Akullo Coprise came up as a recommendation. Nabukalu had planted the seed for a future sports fashion show by helping Fungaroh meet Akullo.
“She wanted someone who could do her make-up without concealing her scars. She wanted to look good with her scars visible,” recalls Akullo, who emerged the first runner-up for Miss Tourism Uganda 2020-2021 from Karamoja region. Akullo is pursuing a bachelor’s degree in Interior design and Landscape Architecture at Kyambogo University. She is also a mental health activist, modelling trainer and make-up artist at Wardz Modelling World. Her profile fitted well into Fungaroh’s aspirations.
“We connected on the first day as I loved her spirit and liveliness,” recalls Akullo. “After her birthday we kept talking and I got to know her deeply and that is when I got to know her passion for modelling and started grooming her into a model,” she adds.
Akullo cites the strength and confidence she saw in Fungaroh for the instant connection. Despite her condition, she stood tall to be counted.
“It is not about pity but strength and confidence you have to do what you love even with your condition and that is one thing I love and will always cherish her for,” says Akullo. Akullo prides herself in believing in people and her will to participate in projects that help people build their confidence, self-esteem and value.
Meeting Akullo stirred up Fungaroh, what was meant to be another make-up session turned into a project. “I chose to hit the runway when I met Miss Tourism Karamoja. On my birthday she came to do my make-up and her simplicity and love made me look at runway queens differently. She said my scars are a gem, take them to the runway and inspire others,” remembers Fungaroh. It took a month of talking and texting for the chemistry to grow into genuine affection and friendship.
Sights on the runway
The mutual affirmation gave Fungaroh a platform to channel out her inner self.
“Deep down I have always loved the runway and spotlight it comes with. I wanted to be a rare kind of model, the kind that stands out in a crowd and I have done a few shoots before,” says Fungaroh.
She is now on a path to being a model and with Akullo by her side , she has the perfect teacher to mould her into a runway star. Fungaroh sees Winnie Harlow as her alter ego. Harlow, is a Canadian fashion model, and public spokesperson on vitiligo, a skin condition who became popular as a contestant on America’s Next Top Model in 2004.
“I want to be the next Winnie Harlow and inspire people,” she says.
Alicia Iman is the last piece of the trio to run the March 7, event and she will be the host. She is also a model that got to meet Fungaroh through Akullo at Wardz Modelling World. Iman like Fungaroh is Akullo’s student already working as a presenter for teens show Teenbliz on Stv.
The trio has worked day and night to make today’s runway event a success. The show will highlight how sports outfits can also be leisure clothing. It will also showcase fitness, energy, strength, confidence, sports activities and fashion icons will be invited to the runway.
“My role is to train the models and bring out their best personality on the runway, their best energy and how best they can play a sport they love,” says Akullo who has been training a cast of models for the show. She is a believer in Fungaroh and the whole project. “She is just starting her career as a model but I know and I believe she will be great. The fashion show will open doors for her in the career as well as fundraise for her,” she adds.
Born to Jesuina Deboru and Alica Boniface in Soroti, in 2005, Fungaroh was a normal child until she developed a rash no one took seriously when she was five years old. She has two younger sisters. Fungaroh got to find out her condition in late 2005 after months of visiting hospitals without answers. Some called it witchcraft, syphilis, others gonorrhea until a doctor at Nsambya hospital figured it out.
‘’They said my immune system was too strong and since I was not exposed to bacteria growing up, my body began fighting itself and I got dermatomyositis”. Dermatomyositis is a long-term inflammatory disorder which affects skin and the muscles. Its symptoms are generally a skin rash and worsening muscle weakness over time. These may occur suddenly or develop over months. It is a connective tissue disorder that creates a build-up of calcium in body tissue/ wasted muscles.
Her condition has had its toll on her but she refuses to crumble as she keeps telling her story with a smile. She has endured several challenges. She has been called names such as animal print by her peers, growing up, she was unable to use public transport because members of the public were fearful of catching the condition despite it being noncontagious.
“People would leave when we entered taxis,” she says. The moment she got to terms with the condition she changed.” I matured at the age of five, I saw my parents cry, look for money, heard doctors say things, saw people pointing fingers and wish me death, I had to build walls of security as I grew up as I did not want people to break me,” she narrates.
She regularly visits the Internet to read about her condition looking for all sorts of remedies. “We read together and work things out together,” she says. Through reading online, she has learned to cut the wasted muscles herself with surgical blades at times.
It has been a journey of seeing doctors, visiting hospitals and taking drugs , which all comes at a huge cost for her family. Her parents are teachers.
“It is financially draining. My father sends me about Shs300,000 a week because I need steroids, sunscreen and antibiotics,” she says. There is no compromise on the above with risks of the condition getting worse yet things look bright now.
Fungaroh has stepped in to get the burden off her father by baking cakes, braiding hair, doing nails and cleaning people’s houses with friends, for the purpose of raising money for her cause.
The long lockdown got everyone scratching their heads for something new. Fungaroh started raising money for her June surgery.
“I started a Twitter campaign on April 28, 2020 and raised Shs 2.2m on the first day. I was shocked and grateful,” she says.
The surgery and trip is projected to cost Shs 23m and she already has 12.2m from the campaign which was fuelled by influencers.
“They (influencers) usually ask for money to promote an online campaign but they did it for me for free,” she says.
There are pledges, someone offered her and the dad air tickets while two families in Nairobi have offered her accommodation until she is ready to return home.
Fungaroh is envisioning life without scars. Already self-christened “Santa with the scars”, she is unaware of what a scarless life has for her. “I don’t know what it will be like without them, but I want them gone. If I got there and they told me it’s a gradual process, I will enjoy them as they last,” she says.
Scars have made her a centre of attention. “I flash a smile, I wave when people are talking while pointing or looking at me. I enjoy that attention,” she says. She has been called animal print but she wears her scars with pride.