Nakuru mom's painful loss fuels advocacy for children with disability

She seems quiet but loud on matters of importance.

29-year-old Peris Wangari found herself in the middle of an unexpected task in February 2021 when she gave birth to her son, Arthur.

Like every mother, her expectations for her child's health were high, as she'd had a fairly smooth pregnancy.

However, during delivery, she was informed that Arthur had experienced birth asphyxia - a condition where oxygen fails to reach some parts of the brain. This led to him experiencing convulsions and an inability to breastfeed.

“During this period, we were admitted, and I was advised to start expressing milk. After two weeks, we were discharged unaware that the symptoms would later on have repercussions,” Wangari who hails from Mawanga says.

Arthur's health continued to deteriorate, she recalls. They were admitted to the hospital three more times.

During their first admission, when Arthur was five months old and being treated for pneumonia, he was also diagnosed with cerebral palsy (CP), a diagnosis she admits she was in denial about during the first two mentions.

It wasn't until the third confirmation that she began to take it seriously.

“I was instructed to see a physiotherapist right away for further assessment who confirmed the diagnosis, and we began regular sessions immediately,” she says.

During this journey, Wangari had desperately hoped her baby would be okay. She was overwhelmed by unanswered questions- specifically why other children her son's age were reaching expected milestones while Arthur wasn't.

This became too much to bear and she fell into depression.

It was not until she met a friend going through a similar experience, that she begun sharing her child's story openly with strangers and friends on the internet.

Her friend encouraged her that the first step in her journey needed to be acceptance and loving her child unconditionally.

“I was so afraid of the stigma that I wouldn’t take my son out to bask, yet he needed it. The only time we left the house was when I took him to clinic and hospital appointments. But with the help of my friend, I gained the courage to tell my story too on social media. The reception was phenomenal and the beginning of an incredible journey of lifting other moms like me,” she says contently.

Wangari courageously admits to finally reaching acceptance through the help of her friend and decided to complement her digital advocacy on CP with physical work.

She says she reached out to her contact who helped her raise money not for her son but for other moms who may not have had the same opportunity she had to reach acceptance.

In 2022, Arthur for Others Foundation was birthed, previously the ‘Inuka Ministry for Children Living with Disability’, which reached out to 15 families at inception.

Wangari's journey, which began at the Margaret Kenyatta Mother baby wing in PGH where she was the first case among other mothers, took a tragic turn with the passing of her son Arthur in March 2023.

She says results showed that Arthur had a blood infection.

Wangari grappled with the decision to continue what they had started together in his absence and finally made a decision.

“We celebrated Arthur’s second birthday unaware that it would be his last,” she pauses.

“I debated whether or not I wanted to carry on with what we had started together in his absence. Finally, I decided to rename the foundation to his name. I thought that even if he’s not here, he gets to live on and touch so many other people's lives, and through sharing his story, we encourage others so that they are not alone.”

Through the foundation, she’s been able to reach out to mothers of children with other neurological and developmental conditions to create awareness.

Wangari notes that society and even parents are unaware of these conditions and generalize them as disabilities for them to relate with these children.

She looks forward to the day she can be able to provide free physiotherapy sessions, drugs to these moms, and free monthly reviews in collaboration with specialists to avert the burden of the costs of the drugs and services and a home for abandoned children with disability.