My Heart in Human Form

Anisha’s Story

I am 44 years old, and I have five children. My youngest child is Anisha. She is eight years old, and she lives with Tuberous Sclerosis Complex.

Before I tell you about her condition, I want you to know who Anisha is.
Anisha likes to play alone. She moves up and down through the house, always busy, always going in and out. She loves things that make sound. She loves strings and rattles. She can spend the whole day playing with a rattle, enjoying the noise, content in her own world. So I make sure there are rattles around the house. When she needs one, she can find it, pick it up, and play.
She is non-verbal. She is autistic. She has global developmental delay. But she communicates. She knows what she wants. When she is hungry, she brings her plate. When she wants water, she brings her cup. When she wants to sleep, she comes to me. She pulls me. She calls for me in her own way. She will not settle until I come to the bedroom and cuddle her. Once I hold her, she becomes calm.
That is one of my favorite things about her.

When she comes for a cuddle, it feels like she knows: this is my person. This is my mother.
I call Anisha my heart in human form.

Tuberous Sclerosis Complex has changed her life and our family’s life. As I understand it, TSC causes growths or tumors in different parts of the body, including the brain, heart, kidneys, skin, and even inside the mouth. For Anisha, the most difficult part has been the seizures. She has them every day. She has drop attacks, where she can suddenly fall and hit her head on the floor. Because of that, she needs to be monitored all the time.
A good day for us is simple.
A good day is a day with no seizure.
If we can walk, play, go outside, and spend the day without a seizure, that is a good day. Other people may think a good day needs something big, but for me, a seizure-free day is enough to be grateful.
The bad days are very hard. I remember nights when my husband and I cried just looking at her because the seizures would not stop. Once, she had a seizure that lasted about five minutes. We had to go to the hospital and spend the night there. The seizures kept coming, stopping for two minutes, then starting again. We were in tears.
But we kept moving forward.

Anisha was diagnosed when she was about two years old, after a series of seizures. I took her to the doctor, and tests were done. A CT scan showed growths in her brain. Later, genetic testing confirmed Tuberous Sclerosis Complex in 2024. The diagnosis was heartbreaking for our family. For me, especially, the seizures changed everything.
I had to stop working so I could care for her.
I have other children too, and they need my support. They go to school. They need their mother. But Anisha needs constant watching. I could not leave her and come back to find that she had fallen during a seizure and hurt her head. So I stayed. I became the person who watches, listens, notices, and learns her patterns.
Anisha has taught me patience. She requires a lot of patience. Sometimes I may teach her something today, and after a seizure, she may forget it the next day. It can feel like two steps forward and one step back, again and again. But I have also learned resilience. I have learned to love more deeply. I have learned that progress may be small, but small progress is still worth celebrating.
In our family, we celebrate every little achievement.

Her siblings love her so much. Sometimes I even tell them, “Guys, this is too much. We also need to train her. She is eight.” But to them, Anisha is still like a small baby. They do not mind carrying her, helping her, watching her, or doing things for her. Since I explained her condition to them, they have been gentle with her. She is the softest heart in the family.
Still, outside the home, things can be painful.

Many people in the community do not understand TSC. They compare Anisha with other children who have different conditions. They may say, “I have seen another child in a wheelchair who can do this. Why can’t your child do that?” They do not understand that every condition is different, and every child’s journey is different.

Even some relatives do not fully understand. Even my husband has struggled to understand all of TSC because it is complex. For me, I spent a lot of time on the internet trying to learn about the condition. That is how I began to understand what was happening. But when people around you do not have awareness, it becomes hard to trust anyone else with your child.

I know Anisha very well. I can sometimes tell when a seizure is coming. I know how she communicates. I know when she is hungry, tired, uncomfortable, or ready to sleep. I know when she needs me. So much of caring for a non-verbal child is learning to listen without words.

I wish more people understood that.
I wish doctors and nurses could understand not only the seizures, but also the daily reality of hyperactivity, autism, communication, and exhaustion. Anisha is very busy all the time. Sometimes I have wished for more help calming her or managing that part of her condition. But I have also learned that not every answer is immediate. Sometimes doctors adjust medications. Sometimes they advise us not to keep increasing doses because they do not want to create more health problems. So I learned to live with the seizures in a different way. When they come, I try to stay calm. I watch her. I protect her. I help her through it.

We still go for doctor visits. The growths have to be monitored. She needs scans to watch what is happening in her brain and other organs. We have been told that if the growths become too much in places like the heart or brain, surgery may be needed. So the journey continues.
One of my greatest hopes is education for Anisha.

It is painful when a child is denied education because her needs are considered too complicated. I tried sending her to school, but I was told they could not take care of her. Maybe if I could afford a home tutor, that would help. I want her to learn. I want her to have a chance. I want people to see that complicated does not mean impossible.

I also wish there were a support group specifically for TSC in my country. I am part of other support spaces, and meeting other parents has helped me. At first, I thought I was alone in this journey. Then I met families with different conditions and different struggles, and it made me stronger. It lifted me. It helped me understand that we are not the only ones carrying something heavy.
To another mother whose child has just been diagnosed with TSC, I would say this: TSC can change the way your child experiences life, but it does not define who your child is. Your child is still special. Your child is still worthy of love, education, patience, and possibility.
For Anisha, I have many hopes. I hope for medicine that can control the seizures better. I hope for support that helps her live as normal and comfortable a life as possible. I hope for education. I hope for a community that understands her. I hope for more awareness so families like ours do not feel so alone.
Anisha’s journey is long. It has been tiring for the family. But we love her so much. She is our source of happiness. We celebrate the smallest achievements because we know how much they mean. We are proud to have Anisha as our daughter.

TSC does not define who Anisha is.
She is not only seizures. She is not only developmental delay. She is not only a diagnosis.
She is the child who reaches for a rattle because she loves the sound.
She is the child who brings a cup when she is thirsty.
She is the child who pulls me toward the bedroom when she wants to sleep.
She is the child whose siblings protect her.
She is my youngest.
She is my heart in human form.
And every day, no matter how hard it is, we keep moving forward.


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