When Growth Stops: A Childhood Interrupted

My name is Zinab Ismail. I am a Sudanese mother and the founder of Sanabl Alataa Organization But today ,I write to you simply as a mother.

My daughter Amina’s life changed when she was only three years old. That was when she was first diagnosed with a rare brain tumor called craniopharyngioma.

This tumor is classified as benign, but the word “benign” can be misleading. While it is not cancer, its impact on the life of a child and her family can be devastating.

Amina underwent two brain surgeries. After her second surgery, when she was seven years old, she had to receive radiation therapy. That treatment changed her life forever.

The radiation affected her pituitary gland, the small but vital gland that controls many hormones in the body. As a result, her growth hormone stopped, and her development was deeply affected.

In many ways, it feels as though time stopped for my daughter.

Today Amina is 17 years old, but her childhood was interrupted. Her life paused in a stage she could not move beyond.

One of the most painful moments for me as a mother is when she asks:

“When will I grow up like the other girls? When will I become taller like my friends?”

Sometimes she also tells me:

“I want to go to school, but I cannot understand the lessons. I cannot participate with the teacher like the other students.”

Children living with conditions like this often need special education and psychological support, but many families do not have access to these resources.

This experience made me realize that there are many children like Amina whose stories remain invisible.

That is why I launched an awareness campaign called “When Growth Stops.” Through this campaign, I hope to raise awareness about children living with rare diseases, especially rare brain tumors like craniopharyngioma.

These children and their families face medical, emotional, educational, and social challenges that many people do not see.

I am sharing this story today to ask for solidarity and advocacy.

I ask the women and leaders in this community to stand with children like Amina and support greater awareness, understanding, and access to care for rare diseases.

Because sometimes the rarest diseases are also the most invisible.

And no child should be forgotten simply because their illness is rare.

With hope,

Zinab Ismail

Sudanese mother and advocate