Cerebral palsy is a disorder caused by abnormal brain development, often before birth.
However, society has not yet come to terms with that, as people often associate the disease with witchcraft or devil worship.
Mothers giving birth to children with such disorders have to carry the burden of stigma and alienation.
This is the case with Barqe Rashid, a mother of two, from Ukunda, Kwale county. She wears with pride the wounds of insults, stigma and ill-talk propagated by some of the residents.
She said she has been accused several times of trying to grow rich easily by ‘sacrificing’ her child and sometimes insulted that she went against the marriage vows, which is why her son is suffering.
“Most of the time I get comments such as ‘Amechira mtoto wake’,” (loosely translated to she engaged in extra-marital affairs which is why the child is sick), Barqe said.
Chira is a Mijikenda word meaning sickness of a child related to infidelity. However, health officials have described the condition as severe malnutrition.
Stigma has forced Barqe to buy her own motorbike for transport and establish a charity organisation for children with special needs.
She has named the centre Diani Cerebral Palsy Caregivers.
“I remember, one time, I heard the boda boda operators making fun that I have spiritually enslaved my child. I felt so bad, and never said a word as I walked away broken-hearted,” Barqe said.
The mother of two said using public transport was also a nightmare as the members of the public gave her a sharp gaze, whenever she was with her child.
“Most passengers would not want to share a seat with my sick child and me. I would experience stigma wherever I went with him,” she said.
According to Barqe, she delivered her son four years ago, and just like any other pregnant woman, she was optimistic to deliver a normal child.
“However, I got a child suffering from cerebral palsy. It was not easy and it took me almost one year to accept the reality. I never wanted to see the baby or even touch it for the first years, it was very shocking," she said as she battled tears.
Barqe said seeing the baby not growing normally is a pain that only a parent can understand, adding that she does not understand why society would arrive at conclusions about things they do know not.
"I didn't ask God to give me a sick child, no parent would wish that. It can happen to anyone and I feel sorry for those who laugh," she said.
At one point, Barqe was taken to a psychiatrist because her mental health was completely a mess.
Unlike many other women, she is lucky to have a supportive husband and family. She said during her recovery period the husband and family members would take the baby to therapy and do the feeding.
"Thank God, I have a very supportive partner. He used to take the baby to the clinic because I was not ready to be seen by that baby," she said.
According to her, 95 per cent of the women with cerebral palsy children in her organisation are single mothers because spouses abandoned them.
The organisation, which she started on September 12, 2019 after going through a tough moment, has 458 children.
Barqe said it is not easy to handle children with disability for it has great responsibilities and a lot of challenges, which include divorce and neglect by society, adding that cerebral palsy medication is very expensive.
According to her, she spends Sh12,000 per month on medicine to prevent convulsions and thousands of shillings for therapy treatment.
Barqe said therapies and treatment for the baby are for their entire lives, adding that with hard economic times, not all parents can manage the costs.
She said public hospitals are good but many people seek the same services and the child won't get the required therapy for private hospitals.
Barqe said transport is also expensive and carrying the baby three to five times a week for therapy is hectic.
"These babies normally can't support themselves. Imagine all the trouble of hiring a motorbike or a vehicle to them to the hospital," she said, adding that the more therapy, the better the child becomes.
The Kwale woman said it also for that reason that she bought her motorbike and hired a person to drive them to health facilities for treatment and therapies.
She said convulsion is another problem, adding that if the babies miss the medicine they convulse and everything starts from zero. They become more immobile because of brain damage.
Barqe said children with cerebral palsy are always on and off from hospitals. They also require special feeding because any mistake leads to pneumonia attacks.
"They can't feed well and when the food accidentally gets into the lungs that means pneumonia," she said, adding that they can be hospitalised for one to two weeks resulting in accumulated bills.
Barqe, who is a a human resource and IT expert by profession, is a graduate of St Paul University.
Her organisation also supports children with Down syndrome, autism and the mentally challenged.
They get support from the East African Women's league, Base Titanium, the Engineers Board of Kenya and the Kenya National Highway Authority.
Barqe wishes for more well-wishers to support and help children with cerebral palsy get better.
(edited by Amol Awuor)