My child George has cerebral palsy and I am worried my next baby could suffer the same fate

Elizabeth Kamau, 25, worries that her next baby could have cerebral palsy, and she dreams of the day her son, George Allan will walk. BY josaya Wasonga

Just before his first birthday, Little George was diagnosed with mild cerebral palsy. Before that diagnosis, I did not know anything about cerebral palsy. I got concerned when I saw that his muscles appeared weak.

He could not sit or hold his head up. Initially, I thought he was just late in developmental milestones, but my gut told me to seek medical help. That is when I took George to a doctor, who diagnosed him with cerebral palsy. 

I was in shock and denial for a while. What shook me to the core was when I was told that this condition did not have a cure, but my son had to start occupational therapy as soon as possible. Besides, this was my first child, and I was still young.

My husband was also in shock. I was working in a pharmacy, but I had to quit so I could take good care of George. I couldn’t trust a house help because most of them are not trained to handle a child with cerebral palsy. Besides, I don’t want anyone to endanger George’s life. 

Therapy

Occupational therapy helps George coordinate his muscles and brain. His brain may be telling him to do a certain task – for instance, hold a toy – but the muscles are unable to do that task. The therapy costs Sh800 for eight sessions. We have two sessions per week. It is improving George’s life. He can now coordinate his muscles, hold items in his hands. His neck and back muscles are getting stronger.

Cerebral palsy becomes a permanent disability if a child does not have access to constant and correct therapy. He still cannot walk, sit, talk or crawl. But with time and constant therapy he will walk and run … and run his own life. When I speak, he understands me. And I do understand what he says, although his speech is slurred.

George knows his parents and friends. He is as normal as can be. He also eats and drinks without any issues.

My son has friends. Kids are not like adults, who can be judgmental. George’s friends, who are all kids, play with him without discrimination.

Fortunately, our family and friends have not stigmatised or discriminated us because of George’s condition. They have embraced us. George has brought tons of love to our family. Every day, our family and friends call to ask us how George is faring.

Seek care and support

I want to tell parents whose children have cerebral palsy to accept their children. Next, they should seek care and support services. They should know that, whenever a child with cerebral palsy gives you that sickly-sweet smile, you find strength to face any challenge.

George loves music, any genre of music. I accidentally found this while at my wits’ end. See, George would cry, and I did not know how to calm him down. One day, I put on music, and he calmed down.

Cerebral palsy hereditary?

When I was told that George had cerebral palsy, I was afraid of getting another child. My faith was shattered. I did not know if the same condition would happen to my other child. With time, I told myself, “If I do not get another child how will I know how it feels to mother a child who does not have cerebral palsy?” I also told myself that I want to get another child so George can have company.  I have since learnt that the condition is not hereditary.

I am a staunch Catholic. I believe God wants George to be a message to other people. God wants to use me as a vessel to tell others how to care for children with cerebral palsy.

Someone of us, young mothers, when we get children, we have loads of expectations … mostly selfish. We want to show off our bundles of joy. Dress the child to the nines. Post the child’s pictures on social media. Get likes. Now, God wants me to do the same things because, to Him, George is a child and he should not be defined, limited or “hidden” because he has cerebral palsy.