Loving a Child with Beta Thalassemia Major

Vita wakes up every day intending to paint something beautiful with her life. Some days, she doesn’t feel like she has all the right colors. These days, she borrows colors from others, adjusting to her limitations, but she still enjoys life.

Winarsih is Vita’s mother.

beta thalassemia major

She always pays attention to the details of Vita’s needs, be it cooking healthy food, selecting the child’s clothes, or picking her up after school by bicycle and going to the child development center. She has been Vita’s foster parent since Vita was 3 years old.

The two have formed a strong bond and Winarsih feels as if Vita is her own flesh and blood.

Vita went to live with Winarsih and her husband a few years ago. When we conducted a survey for new sponsored children, Winarsih’s husband and development center coordinator, Waryanto, learned that one child lived quite far from the center.

Curiosity drove him visit Vita’s grandmother’s house.

“She lived with her grandmother 14 kilometers from Sidoharjo, Indonesia. Both of her parents passed away; her mother died when Vita was still a baby, and her father was killed in a traffic accident a year after that.

She was lying on the ground when I first went to see her, sleeping on some cool dirt of the front porch in front of the house on that hot day. My heart was so moved by the sight that suddenly I signaled to forbid the grandmother from waking her up.”

Waryanto waited patiently until Vita awoke. His heart was trembling and he cried because of the poverty he witnessed. He knew then that he had to do something to help the child.

After a long conversation with the grandmother, Waryanto returned home to Winarsih to discuss the possibility of having Vita live with them. They don’t have biological children and Winarish agreed to the plan.

beta thalassemia major

Today, Vita likes to play with her mother’s pink bicycle, pedaling around the neighborhood. But Vita suffers from Beta Thalassemia Major, a genetic blood disorder.

Her little feet keep pedaling her mother’s pink bike. It’s such a joy to feel the fresh breeze touching her face. Her skin is getting darker now, but that doesn’t stop her from enjoying the moment.

girl in pink dress riding bike

Darkening of her skin is an obvious sign that she needs another blood transfusion. She needs one every three months, as the doctor predicted she would.

At first, Vita’s foster parents didn’t notice anything unusual regarding her health. Then they discovered that she was growing taller but not gaining enough weight.

Besides being underweight, Vita tired easily. Her performance at school was not promising, and she had to repeat her first year of elementary school. Her health definitely affected her school performance.

For months Vita received regular medical checkups, and she was finally diagnosed with Beta Thalassemia Major. Because of this condition, her body is unable to produce enough red blood cells. This inability to regenerate red blood cells meant that Vita’s body got weaker and weaker, affecting her growth.

The doctor suggested a bone marrow transplant as an effective treatment, but that required further examinations and a specialist.

Vita’s blood type is also rare, so her blood must undergo special processing before it can be infused. She is undergoing the painful blood transfusion every three months now and has already endured two of them. Her foster parents take her to a hospital in Semarang, two hours away. They are willing to go through the whole ordeal and be with her all the time.

woman walking with girl in pink dress

They often spend time sleeping in the corridor at night just to be near Vita.

Without Complementary Interventions funds, Vita’s foster parents would not have been able to afford the expensive blood treatments she needs. We enable children in our program to have regular medical care, but if a health problem becomes more serious and needs further intervention, these funds can be accessed to provide for critical needs such as health care.

Waryanto shares,

“When I heard about Vita’s condition, I knew that God will never leave us nor Vita. Complementary Interventions is one of God’s interventions for our family to see that He will never leave His beloved people.”

And Waryanto believes that God is running to help his daughter.

1 Comment |Add a comment

  1. Gretchen September 5, 2013

    Thank you for sharing this beautiful story! I get so excited to give when I know more about the real people who are being blessed by what I have the honor of sharing!

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