Waardenburg Syndrome: Shakul & His Striking Blue Eyes

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

Little boy with bright blue eyes and striking patches of white adorning his face looks into the camera

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

Waardenburg Syndrome picture - A boy wearing a skull cap hugs a toddler with blue eyes and partial albinism.

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.

A boy with Waardenburg Syndrome sitting next to a smiling man.

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.

Waardenburg syndrome pictures - a boy with partial albinism puts his hands in the air while a woman claps for him.

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

Waardenburg Syndrome Pictures: a boy with partial albinism tosses a toy outside a home to an older woman.

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

a woman sits on the side of a dirt road, cooking plantains on a simple woodstove.

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.

Waardenburg Syndrome picture: A boy with blue eyes and partial albinism, holding his arms up to show he is 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?

Sponsor a Child With Special Needs! ›

This post was originally published January 23, 2020 and updated March 28, 2024

27 Comments |Add a comment

  1. Estella September 11, 2022

    This is a beautiful little boy! I am so happy his grandmother took him and is raising him to be a amazing little man! May God bless them always! 🙏🙏🙏❤️🙏🙏🙏

  2. Dawn McIntyre January 30, 2022

    Beautiful story! Reminder of the difference and blessings sponsor can make for a child and their family!

  3. APPHIA ZOUNGRANA March 30, 2021

    Very touching story. May God help us have mercy and compassion for people in need and support them as much we can.

  4. Michael Shaw March 13, 2021

    Great story of live that God is always with us.

  5. Bette March 13, 2021

    What a touching story and what a beautiful boy! Thank God for all He is doing and still continues to do! Thank you Namatovu for raising him and Matt for sponsoring him. This is so beautiful!!!

  6. Telma September 26, 2020

    Thank you for sharing the beautiful story of Shakul, I wish I could sponsor more children (I already sponsor 2 here and 1 at Food for Hungry) and I can tell there I have being blessed by God every step of the way. Just not working right now but with big hopes for the future, God have never let me down. I pray that Shakul and all the kids, specially the ones with special needs can find their sponsors, in Jesus Name.

  7. Jeanne April 28, 2020

    Such a beautiful story for the blue eyed boy…raised with the help of grandma and a sponsor…I am so impressed that he go services for his special needs..especially the hearing impairment. It warms my heart to hear and see of these success story’s thru compassion interaction.
    Prayers for this beautiful boy, his grandma,adoptive Mom ,his Dad, and the Sponsor that opened his world for the better.
    VIRTUAL HUGGS TO YOU ALL..IM SO GLAD I CAN HELP…AND BLESS SOME OF THESE KIND OF NEEDS…
    AS WELL

  8. Patty April 10, 2020

    Thankyou , I enjoyed his story so much! I shared it with my daughter who enjoyed it also, and thinking about sponsoring a child!

  9. Mabula March 27, 2020

    GOD IS GOOD ALL THE TIME.

  10. Lynne Diaz March 2, 2020

    What an awesome story of GOD’S compassionate love
    and care for one of his precious, abandoned sheep! Thank you for this amazing story Carol❤

  11. Caroline Mwinemwesigwa March 2, 2020

    Thank you so much friends. God is doing amazing things in the lives of people.

    God bless you.

  12. PAUL February 25, 2020

    I have been touched by this inspiration story. May God give us grace to minister to the disadvantaged children even more. Thanks for sharing.

  13. Tumwesigye Benard February 25, 2020

    This is an inspiration to me to minister to more children. May God bless the new family of this innocent and beautiful soul.
    Thank you Carol for this story.

  14. Akalyamawa Godfrey February 25, 2020

    Touching story of what God can do

  15. Ronald Mangeni February 23, 2020

    Wow, God is surely so amazing. He works in ways beyond our comprehension. Shakul’s story is an amazing journey of one blessing to another. Thank you Carol/ Compassion for always allowing God to use you to do ministry.

  16. William King February 13, 2020

    I have come to the conclusion Compassion International is a FRAUD. I have sent many letters over the past year to my sponsored child and received only a few in return. I ask questions about family , friends and goals and have never received a letter back answering any question I have asked. Yesterday I received a letter answering questions I asked last Summer . This is unacceptable. I sent a family gift of $400.00 on two occasions and was looking forward to helping my sponsored child and his family forever . I am disappointed in believing in this organization. I believe this is nothing more than a scam with no compassion for anything but money . I hope and pray my comments are posted . You all should be ashamed of yourselves .

    1. Sierra February 13, 2020

      Hello, William. Thank you so much for reaching out to us with these concerns! It pains my heart to hear about these issues that you are facing that are causing you to doubt the integrity of Compassion. I was able to locate and review your account; it looks like Dita has written you every other month for the past year, as well as sent you a family photo in response to the $400 family gift you sent him last December. I am so sorry if you have not been receiving all of his letters, and we would love the opportunity to help make sure you are receiving all of the communication from Dita that you should be. Please, don’t hesitate to send us an email to [email protected] with any additional questions and concerns you may have. We thank you so much for the care and concern you have for your sponsored child, Dita.

  17. Gilbert Ouma February 10, 2020

    A lot of potential in this life! Watch the space. Thank you Carol for this beautiful story

  18. MWESIGWA OBED January 28, 2020

    This is a real life changing story. Thank you for all who took part in changing life of this child.

  19. Sarah January 25, 2020

    I give God the glory for this story.
    Surely thank you good people for giving hope to Shakul.
    Thank you Shakul’s sponsor,Namatovu, Compassion,teachers and everyone in this.
    More love and blessings to you all.

  20. Nicholas Kalyebara January 25, 2020

    Beautiful story, about a beautiful child and the wonders that God does through His people! Thank you, Carol/Compassion, for sharing with us this story. God is sure still writing it!

  21. Noirine January 24, 2020

    Beautiful story. God bless everyone that has made a contribution towards Shakul’s welfare. #every life matters

  22. Jane Ruth Wanyama January 23, 2020

    I know Shakul because I have met him at Katuuso Child Development Centre in Uganda. Reading this story has blessed my heart to know that God cares for all mankind. It does not matter who you are and where you come from.
    Thank you Carol.

  23. Karen Sheets January 23, 2020

    What a beautiful child with a beautiful story of Grace, Mercy and Love. Love, God’s Love, the One True Love, is the greatest gift of all. Thank you for sharing this story with us!

  24. zed castro January 23, 2020

    This is the kind of information that makes us do more for this kids and for the Kingdom of God.

  25. Terri Paterson January 23, 2020

    What a beautiful and inspiring story! May God continue blessing the ministry of Compassion International so that there will be thousands (or perhaps millions) more in the years to come. God bless this sweet little treasure and his adoptive mama, and may this story inspire the sponsorship of many more children waiting to be chosen.

  26. Grace January 23, 2020

    beautiful beautiful story and child. Thank you so much

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