We know many people who have disabilities, but this child has a unique one.
People often call her the bat because of these thick stretchy muscles on both sides of her neck.
She is the only one in her family, of eight children, to have this condition.
All her brothers and sisters were born without any disabilities.
At school she is like a normal child and focused in class and at home she plays with other children.
However, her disability makes life hard for her, because many in the community treat her poorly, but, worst of all, she often feels extreme pain because of these scary muscles on her neck.
How was this child born with such a rare condition when all her siblings were born normal?
How does this child live with these strange things?
When I found out about this child, I took a long journey to Drc Gma, where this child was born, because my heart sensed that maybe this child has a special problem, and I was right here.
Are her parents ready to share the story of their daughter with us?
My name is Ki Juka.
We live here in nongo District, South Kevu Province in the Democratic Republic of the Congo.
I have eight children.
One of them, Deell, who is my fifth child, has a disability.
My name is Cecil and I am the mother of the child.
This child came from my fifth pregnancy.
My other kids were all born healthy, without any disabilities, but this one was not the same.
I really don’t know why this child was born differently.
While I was pregnant with her, everything seemed fine.
I didn’t have any big problems or sickness.
I continued with my everyday activities, just like normal.
Then, when the time came and I started feeling labor pains- the ones that tell you the baby is on the way- we didn’t waste any time and went straight to the doctor.
My wife went to the hospital called Koko to have our baby.
Right after she gave birth, we saw that our baby had a disability, which made us very scared.
The hospital then sent us to another hospital because our baby had trouble breathing.
There the baby was put on a machine to help breathe for 10 days.
We were afraid the baby might not make it, but thankfully we were eventually allowed to go home.
No one explained to us why our baby was born with a disability.
This was a big shock to us, since all our other children were born healthy.
The doctor told me to stay strong and be patient, explaining that these things can happen.
His words helped me feel a bit stronger at first.
Our other children were upset by the situation, but they soon came to accept their new sibling.
Before going further, let’s wonder why a child might be born with a disability even though their brothers and sisters are born without any problems.
Here is the doctor who looks after this child’s health every day.
My name is Joseph and I am the doctor for that child.
It’s common for a child to be born with a disability, which can happen for many reasons.
Sometimes a child is born with a disability because of some diseases their mother had during the pregnancy.
Author times we might not know exactly why, but that’s often the main reason.
Many times, disabilities in children are because of infections that the mother had while pregnant and did not treat properly.
After they left the hospital, they began the challenging journey of raising their disabled child.
It was difficult because the child had many problems, mostly because they were born different from others.
From the time she was just a few months old until she was about 2 years old, she was very delicate and didn’t like very cold places.
As she grew, she started having health issues like her chest, left leg and arm swelling and becoming more painful, especially by the time she was 5 years old.
Despite these challenges, she shows that she’s a clever child.
She helps me with chores around the house.
She can do tasks like washing dishes and cleaning utensils just like any other child.
It is fine, but she keeps facing difficulties because of her disability.
Thankfully, she began going to school, but it hasn’t been easy for her.
She began going to school only sometimes because she faced unkind treatment from other children, which made her not want to go to school anymore and she stopped attending.
However, after some time we decided to take her back to school and she is currently continuing her studies.
In society she faces several challenges.
People, especially other kids who don’t know her well, often bother her and want to touch her, which makes her uncomfortable.
Despite these issues, she has a good relationship with her brothers and sisters at home, but when she’s out, some people are unkind to her because they notice she’s different.
She would come to me and tell me dad, people on the street insulted me and stared at me.
She also mentioned that some kids at her school were mean to her.
This led us to talk to the school authorities to ensure she wouldn’t face unkind Behavior anymore.
Now the school situation has improved and they tell us she’s doing okay with the other children.
My name is teacher ampire and I am the assistant director at epe mmilo school.
This child has been with us for 2 years and is now in the second grade of primary school.
She started school a bit late.
Despite her disabilities, she is a very smart student.
She does so well in her studies that she is often among the top five students in her class.
This shows how intelligent she is.
In the past some children were not kind to her, but now we have a rule at school: no one is allowed to treat others badly or differently because they have a disability.
We teach all our students that every child deserves to go to school, even if they have a disability.
This isn’t the first time we’ve had a child with disabilities at our school.
Almost every year we welcome students with different abilities.
Now this child is doing well and fits in with her classmates.
She doesn’t have any problems and her parents can confirm this.
She doesn’t go to a special school for disabled children.
She goes to a regular public school with other kids.
It’s really nice to see her at school, because she does just as well as the other students and gets good grades.
Please, when she’s at home, she’s like any other child and plays with the other kids in the village.
However, there is a concern about her health because she needs treatment but has faced some difficulties getting it.
This worries her parents and everyone else who looks after her health.
She is now 9 years old.
When she was 2 years old, they told us they would do surgery on her, but it never happened.
Once some doctors came to our village for a health event and we took her to see them.
After checking her, they said it was very important for her to have surgery, but when it was time for the surgery it got delayed.
They said we should wait until she was at least 6 years old.
Sadly, by the time she turned six, we didn’t have the money for her treatment.
There’s a concern that her condition might make it hard for her to find a husband in the future, because she is a girl, but the real reason we haven’t treated her condition is that we just don’t have the money.
If we could, we would get her the treatment.
We want to see her healthy, but we can’t afford it.
When I think about her future, I feel sad, because being a girl with a disability might make it hard for her to find a partner.
We know that for girls, appearance can be important too, but the main issue is not just about looks.
She often suffers from serious headaches and sometimes she even faints.
This disability can lead to many problems.
For instance, she doesn’t look her age.
Although she is 9 years old, she appears to be only six.
This difference between her actual age and how she looks is an issue.
The good part is that her disability can be treated.
However, the problem is that treatment costs a lot of money.
The issue is that her disability makes things hard for her.
At school.
She often tells us she has headaches and sometimes it seems like she is confused or not all there.