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I got extra strength from raising special needs child

By Jasmine Atieno
Tuesday, May 25th, 2021 23:31 | 4 mins read
Anita Santuri and her son, Jude. Photo/PD/Jasmine Atieno

Cerebral Palsy might have no cure but, Angeline Sanita, popularly known as Anita Santuri has vowed to never stop giving her son opportunities.

The wish of any expectant mother, is to bring to the world healthy children and as bouncy as they get.

This wish though is not always a guarantee as sometimes things don’t turn as perfect as they had been envisioned.

This is a familiar tale for Kilifi-based radio presenter and businesswoman Angeline Sanita, popularly known as Anita Santuri.

Her four-year-old son Jude was born on May 15, 2017 at Kilifi District Hospital.

She had a prolonged labour before the doctors took her in for Caesarian Section.

The baby had difficulties in breathing, but he seemed okay the time he was brought to her. 

What she missed was the fact that the baby had not cried, he wouldn’t feed either throughout the night, When the doctors were doing ward rounds in the morning, one noticed he was having a silent seizure.

So, Anita and her baby were moved to high dependency unit, where they remained for four days. 

Shocking revelation

“Nobody explained to me what was happening except that the seizure happened because he was tired, but would be okay.

I took my son for all his vaccinations and clinics as was expected. Two months later, I noticed that his head was becoming small.

I was scared and took him to hospital. I was told it is normal and he would be okay with time. We went back home.

After a week, he started crying uncontrollably. I took him back to hospital and they did some tests. I was told my son had cerebral palsy and epilepsy.

I was shocked. I have never seen anything like this in my family. I asked his late father if they had such a case in their family and he said no,” shares the young mother. 

Anita started withdrawing from friends — she did not want anyone visiting her house, not even family members.

She wanted to be alone with her son. It was the hardest time of her life; she had little understanding of what was happening and did not get any counselling. She even started blaming herself.

At two months and two weeks, young Jude was put on anti-convulsants to stop the seizures. At four months, she expected him to be either sitting or crawling, but he did not do any of that.

He was a jovial boy, though. She had to take him back to hospital once again and was directed to an occupational therapist. 

So many challenges

“I started reading a lot about his condition and that’s how I found out that there is no cure for cerebral palsy, but it can be managed through therapy. So, two days a month was not enough for him.

I started seeking other options and places for therapy. That’s how I landed at Association for the Physically Disabled of Kenya (APDK) Porttreiz, Coast, when he was nine months.

We went to that place until April last year following Covid-19 pandemic. He’s been on different medication, but it seems like his seizures are not responding to any medication. It’s been a trial and error kind of thing,” she says.  

This journey has had so many challenges. First, when Jude’s father passed on in 2018, Anita had to quit her job in order to take care of her son.

“I had noticed the house girl I had at that time was mistreating Jude. So I had to be a full time mum,” she says. 

Having a special needs child can be emotionally draining as well, for instance your child doesn’t get to be invited to children’s parties because he’s considered weird and different. 

Amazing grace

When you get a job, you need an understanding boss. You might be called home when the convulsions start and you need to rush and take care of that.

You might be forced to give up dating because your child will always be your priority, and someone may not understand where you are coming from.

Not forgetting the costs of medication and therapy, which have also been expensive on the young mum. 

“I take him for therapy at least three times a week and each session costs Sh1,300. And he’s responding well to it. He is on a special diet, which is also not cheap. But he needs it.

You need to do all you can to make sure it’s available or else you will deal with cries and convulsions.

His convulsions are triggered when he’s angry, too excited or hungry,” intimates Anita.

As much as she has had so much help from many friends and family, her greatest support system remains her mother and her best friend, Linet Kanini.

They have done their level best to make sure she stays sane. One thing she has come to realise is that no one is weak.

Everyone has the apability to take care of a special child, only that they are not placed in that situation.

The other is that children are a blessing. No matter how challenging the situation gets, one should never regret having their child.

“Trust me when I say I’m blessed. I was jobless for three years, raising my son, my two sisters and one nephew, but there is no single day we have gone hungry.

I can’t explain how, but things just happen. I have made friends out there some, I don’t even know.

And this started happening the moment I accepted Jude fully. It’s not easy taking care of special needs children because you have no idea when they will be okay, some are like that forever.

You just have to come up with a mechanism of making sure your mental health is  in tip top shape.

You can’t take care of a child when you are not okay,” shares the third born in a family of seven. 

While she is soon welcoming her second baby, she also has plans to take Jude for stem cell treatment in India, which will cost nearly Sh2.5 million.

She is optimistic after this procedure, he will be able to do one or two things on his own.

“I stopped feeling sorry and miserable for myself; I understand that cerebral palsy has no cure. But giving him opportunities, I will not stop,” she says lovingly.