Searching Deeper

She was born on July 12, 2022. She came through a normal birth. There were no complications. She looked fine, just like any other baby.

For the first months, I watched her the way every mother watches her child. I looked for smiles, sounds, movements, growth. I expected the usual milestones. I expected sitting, crawling, standing, walking. I expected time to unfold in the ordinary way.

When she was about nine months old, I began to feel that something was not right. She was not able to sit properly. I took her to a nearby pediatric specialist. I was told she was fine, but that she should go for physiotherapy.

At one year and one month, she started physiotherapy. Within two weeks, she was able to crawl. That gave me hope. But when she was one year and six months old, I expected her to be standing or walking, and she still could not. That is when I went to the hospital where a doctor began attending to her and requested tests: a muscle enzyme test and a thyroid test. We did them and they came out clean.
Clean tests are supposed to bring relief.
But when you are a mother and you still see something unusual in your child, clean tests can also deepen the uncertainty.

I became desperate for answers. I started investigating on my own. I watched her closely. I searched. I tried to understand what I was seeing. There were unusual body movements, especially when she was lifted quickly after sleep. I brought that information to the doctor. The doctor then requested an EEG at another hospital. The results were mildly abnormal, and we were told she was having seizure attacks.

After that, she had a CT brain scan with contrast at another hospital again. Again, the results came out clean. She was prescribed sodium valproate starting in September 2024.
But there were other signs too. Back in October 2023, she had developed a skin problem on her upper back near her left shoulder. It looked as if someone had poured hot water on her skin. After two weeks, it would begin to dry and produce patches. Then the skin would return to normal, only for the problem to start again. Sometimes you could see veins. The medicines were not helping.

She also had a poor appetite. Her body looked weak compared with other children her age. She could crawl, but she was very weak. She could pronounce a few basic words, but her speech was limited. She tried to stand while holding onto things, but she could not stand on her own. When she tried to balance, she used her toes and the side of her foot. From what I observed, the problem seemed to affect her mostly from the knees down to the toes.

In June 2025, the doctor requested an MRI brain scan. It also came out clean.
Again, no answer.
Eventually, the doctor from that hospital transferred her to a pediatric neurologist who requested genetic testing. The testing was done in Canada after financial assistance from well-wishers. I could not afford genetic testing on my own. I had already spent money on consultations, scans, medications, and travel. An MRI alone was already costly. Genetic testing was far beyond what I could manage.
In March 2026, the results came back.
She had NESCAV syndrome.

Finally, there was a name. But even with a name, the road ahead was still uncertain.
I learned that for rare conditions like this, many families are left behind. Some children never reach the specialists. Some parents cannot afford the consultation fees. Some cannot afford scans. Some cannot afford genetic testing. Some are told to wait. Some are told there is nothing wrong. Some are told the problem is spiritual. Some never get the chance to know what their child is facing.

I kept pushing because I was asking for more for my daughter. Even when I did not have the money, I asked to be transferred. I told the doctors, “I will find the money, but transfer her.” I searched on Google. I searched symptoms. I searched because I knew my daughter, and I knew something was happening.

That is what I would tell another mother: go deeper. Search deeper. Go to the specialists. Ask questions. Do not stop only because someone says the child is fine if you still feel something is wrong.
It is hard to convince people sometimes, because in our communities, spirituality is powerful. People may say a child has been attacked spiritually. They may say there are goblins or forces involved. I believe in the spiritual side of life too, but I also believe we must balance that with the scientific side. We must pray, but we must also go to doctors. We must seek spiritual strength, but we must also seek medical answers.

My local community has supported me emotionally, and my husband has supported me very much. But there are still challenges. Some people look at her and say she looks fine. Others do not understand why she cannot stand or walk. Some people think children with conditions like hers are incapable.
But my daughter is not incapable.
She is intelligent. She can reason. She can answer some questions. She understands more than people may think. Her environment may not yet be giving her everything she needs, but she is capable. She is smart. She is promising.

That is why I want her to go to school. I want her to get the education she needs. Maybe it will take time before I can afford the right school or support, but I am planning for her future. I believe she can serve as an example to other children and families living with the same condition.
Still, the needs are many. She needs physiotherapy. She needs medication. She takes baclofen, clonazepam, and sodium valproate. She needs orthopedic shoes because of the way she uses her toes and the side of her foot to balance. She needs care that can help her stand, move, communicate, and develop as much as possible. Any help would be appreciated.

The costs are heavy. Once people know our children have special needs, everything becomes expensive. Consultations, therapy, tests, shoes, medicine, education — each one becomes another mountain. You have to sacrifice. You put aside other things so you can focus on your child.
I have two children. Sometimes it may look like I care for one more than the other, but that is not because I love one more. It is because one needs more from me right now. That is difficult too. As a mother, you carry the needs of one child while still trying to be present for the other. You divide your time, your money, your emotions, and your energy. You keep hoping that one day there will be enough support for all of them.

My hope is that doctors and scientists continue researching deeper into NESCAV syndrome. I hope that in the future, there will be more answers, more treatment options, and more equipment that can help children like my daughter. The doctors said that maybe in five years, more testing or better tools may be available. I hold onto that hope.

But I also know that hope cannot only come from the future. Families need support now.
We need assistance with genetic testing. We need assistance with specialist visits. We need affordable care. We need education. We need organizations and donors who can help children not be left behind simply because their parents do not have enough money.

There are many children whose conditions are not understood. Some are in villages. Some are in towns. Some are sitting at home because their families cannot afford the next step. Some may be labeled spiritually attacked when what they need is a diagnosis. Some may be seen as disabled before anyone sees their intelligence.

For me, this journey has been difficult, but it has also taught me patience. It has taught me to advocate. It has taught me to keep asking questions. It has taught me that sometimes a mother has to become a researcher for her own child.

My daughter’s story is not only about illness. It is about being left without answers and still searching. It is about clean tests that did not end the questions. It is about faith and medicine walking together. It is about sacrifice. It is about a little girl who crawls, speaks a few words, tries to stand, and keeps showing us that she is capable of more.

I want her story to open the way for others.
I want it to tell doctors, scientists, donors, and communities that many children are waiting for someone to search deeper.


Poem associated with the narrative