As Nigeria joined the global community to mark the 2022 World Cerebral Palsy Day, some mothers raising children with this health condition share their experiences and the challenges they face. ANGELA ONWUZOO reports
When Nonye Nweke had her daughter and only child, Ziim, in June 2006, her joy knew no bounds.
Ziim meant the whole world to Nonye. She was saving daily from her restaurant business to send her to the best school.
But at the age of four months, she started getting concerned about the health of her daughter wondering what was wrong from the signs she was seeing.
After a series of medical examinations, Ziim was diagnosed with cerebral palsy at five months old. Since then till now Ziim has been completely dependent on her mother for all activities of daily living. She is a teenager now, yet still depends on her mother for most things.
According to the mother, Ziim, now sixteen years old, has the severest type of cerebral palsy, meaning she will be completely dependent for life.
Though cerebral palsy so far has no cure and is often misunderstood by many people due to superstitious beliefs attached to the condition as a result of lack of awareness, Nonye vowed never to abandon her daughter. She said that she will continue to support her and give her all that she needs to be happy even when her situation appears hopeless.
Sharing her heart-rendering experience with PUNCH Healthwise, the mother of one said, “My daughter, Ziim was diagnosed with cerebral palsy at five months old. But I started getting concerned about her when she was four months.
“Cerebral palsy is a broad spectrum, thus what a person with cerebral palsy can do depends to a large extent on where she/he falls on the spectrum.
“There are so many challenges that come with living with cerebral palsy depending on the level of the person’s affectation.
“My daughter is on level five of the Gross Motor Function Classification System of cerebral palsy. GMFCS is a way of clinically describing the gross motor function of people with cerebral palsy based on self-initiated movement abilities.
“Basically, it focuses on what and how the person initiates or/and performs activities like sitting, and walking, and how much support the person needs to do those motor activities. So, for my daughter specifically, she falls on level five of GMFCS which is the severest.”
She also says her daughter suffers other health issues as a result of the disability.
“Ziim has other issues. She has what is called comorbidities like seizure disorder, so she is completely dependent on all activities of daily living.
“I am doing everything possible to improve the quality of her life, her therapies are done, she is well looked after and she is in good health,” she added.
According to the Centres for Disease Control and Prevention, cerebral palsy belongs to a group of disorders that affect a person’s ability to move and maintain balance and posture.
The CDC explained that cerebral palsy is caused by abnormal brain development or damage to the developing brain that affects a person’s ability to control his or her muscles.
The American Academy of Pediatrics says children with cerebral palsy have trouble controlling their movement.
According to experts, cerebral palsy’s symptoms can be mild to severe, including the inability to walk; seizures; problems with vision, hearing, or speech; intellectual disabilities; and other serious conditions.
No daycare centres for children with special needs
Nonye told our correspondent how her daughter’s condition consumed her restaurant business among other challenges she has had to face.
The founder and Executive Director of Cerebral Palsy Center recounted, “As a parent, the challenges of taking care of her are enormous, from when she was a baby when I could not find an appropriate daycare centre for her.
“She was seven months old when I took her to a daycare centre and a few hours later that same day, they called me to come and take her back. I had gone to the centre the previous day to make an inquiry and so the next day, I took her there.
“To my surprise, at about 11 am, they called me to come and take her. But I didn’t go immediately because I was running a restaurant and I didn’t have anywhere to keep her. So, towards the end of the day, I went to pick her up.
“When I got there, the person managing the school told me that the owner of the daycare centre came and saw my daughter and said they wouldn’t take her and that other mother would start withdrawing their babies if they see my daughter.
Facing discrimination from infancy
“When I heard that I cried because I am like how can this be happening to my daughter at seven months old? My daughter started facing discrimination at
an early age of life. So, I have to think about what to do with her to continue with my work because I was running a restaurant business.
“So, I didn’t have anywhere to take her to until she turned one year old when I started taking her to a centre where they manage children with all forms of disabilities.”
Continuing, she said, “She was there for about 18 months when I found out it was not appropriate for her. Because the centre manages children with all kinds of disabilities like down syndrome, children who are not walking and are lying down are often neglected. So, I had to take her from there and I didn’t know what to do with her.
“After searching for a while and could not find a daycare centre that will accept and take good care of her, I then said to myself since you cannot get what you are looking for, why not create one?
“So, I closed down my restaurant business to be able to care for my daughter and that led to my establishing a daycare centre for children with cerebral palsy.
“And that was how I founded the Cerebral Palsy Center in 2010 to cater to children with the condition, raise awareness, and provide counselling.
“So, I could not focus on my work. My daughter is now sixteen years old. Though she is a teenager, I still have to do everything for her because she is completely dependent.”
