When we posted a picture on social media of a little boy with a striking face, it became one of the most liked photos we’ve ever posted. Four-year-old Shakul from Uganda has Waardenburg syndrome, which affects his pigmentation and hearing. Shakul’s unique beauty seems to have struck a chord, so we wanted to share his incredible story with you.
Waardenburg Syndrome: Shakul’s Story
It was past midnight when 60-year-old Namatovu woke to a phone call from her son. She panicked at his news. Life would never be the same again.
“The woman put the baby outside the door. I heard him crying,” her son Sowedi says. “When I opened the door, he lay there completely naked. I didn’t know what to do.”
Sowedi, the baby’s father, found the 2-month-old baby laying outside his door, cold and helpless. His wide eyes were startlingly blue — a rarity for a Ugandan baby. His face also had striking patches of white. The baby’s mother didn’t understand and abandoned the baby, named Shakul.
But Sowedi also couldn’t care for the baby, so at age 60, Namatovu, Shakul’s grandmother, took him in to raise as her own. At the time, she washed clothes and worked as a part-time cook at the Compassion-assisted Katuso Child Development Center to earn money for her younger son’s school fees. She didn’t have much, but she was determined to care for both boys.
Namatovu Receives Another Life-Changing Phone Call
Shakul at age 2 with his loving uncle, Namatovu’s younger son.
This time it was the director at the child development center, where she was a cook. She asked Namatovu to come and cook for special guests the following Saturday. The guests from South Korea were coming to visit the children they sponsor.
On the day of the visit, Namatovu brought Shakul with her, as there was no one to take care of him at home. While she was busy in the kitchen cooking her very best delicacies, the group’s trip leader, Matt, saw Shakul and began interacting with him.
Matt had such a connection with Shakul that he asked to sponsor him. The church arranged everything, and Matt became Shakul’s sponsor.
Shakul and his sponsor, Matt
That meant the church had the resources to get Shakul the care he needed, including medical care.
A health checkup revealed Shakul had Waardenburg syndrome, a rare genetic disorder that can cause profound hearing loss and pigmentation changes in the hair, eyes and skin.
Many people with Waardenburg syndrome have two different-colored eyes or bright blue eyes, as Shakul has. Another symptom of Waardenburg syndrome is partial albinism.
In Shakul’s case, he has partial albinism in his face, hands and feet. Shakul is also completely deaf.
In impoverished rural communities, children with disabilities often can’t access the educational support they need. But thanks to support from his sponsor and Compassion’s local church partner, Shakul was enrolled in a special-needs school to receive support.
Shakul with his cheerleader and special-needs teacher, Mary.
“Shakul likes learning,” says Mary, Shakul’s teacher. “He shows interest in most things. He understands very quickly.”
The center staff also secured Shakul a spot at a school for the deaf, enabling him to learn sign language.
“Shakul is very sharp, so he needs a school that can help him progress,” says Alison, the director at his child development center.
Shakul Is Now a Beloved Part of His Community
Shakul and Namatovu play toss in the alley outside their home.
Shakul has a charming personality and is loved everywhere he goes. He is inquisitive and loves playing with machines, phones and computers. Although he can neither hear nor speak, he has invented his own form of communication, using his hands and body movements to express himself.
Shakul also adores his grandma. Often, he will sit on her lap, cuddle her arm and suck his thumb. Although Shakul has not met his mother, his father visits occasionally, and Shakul loves him. Shakul is also an observant boy.
“He knows if someone is hurting. He reaches out to the person,” says Namatovu. “When I am quiet, he comes and taps me, and with his hand he gestures, ‘What is it?’ He also just wants us to play all the time. He likes giving me spontaneous hugs.”
More Blessings for Namatovu and Shakul
Namatovu cooks and sells plantains on the street.
Besides the joy and sweet hugs from Shakul, nothing prepared Namatovu for the other blessings that came from caring for the blue-eyed baby. As she has grown older, her back no longer supports washing clothes for a living. Instead, Namatovu now spends her evenings roasting sweet plantains by the roadside.
Because of her small income, Namatovu could only afford a stuffy, one-room house that leaks when it rains. But a financial gift from Matt, Shakul’s sponsor, has changed everything.
With the gift, Namatovu bought a small piece of land. Construction has started on a safe, sanitary home with three bedrooms. Namatovu is overwhelmed by this generosity and love.
“I am so grateful to the sponsor,” says Namatovu. “I was so happy and believed indeed that God is here for us.”
The blue-eyed baby who was abandoned in the middle of a cold night has become a blessing she never expected. Namatovu loves Shakul deeply and is grateful to God for blessing them both through Shakul’s sponsor.
Shakul Is Now Strong.
Thanks to the support and strength of his grandmother, the local church and his sponsor, Shakul can grow to become all God meant him to be.
Help a Child Facing a Special Need Today
Children in poverty who have special needs, like Shakul, often can’t access the care they need. There is a precious child with a special need who is waiting for someone to help them. Will you sponsor a child with a special need?
This post was originally published January 23, 2020 and updated March 28, 2024