'He's a little fighter': Six-year-old Antoni is never without a smile

By Pieter van Zyl
24 November 2016

You’ll seldom see six-year-old Antoni van Reenen, from Brackenfell, Cape Town, without his sunny smile – despite the fact that he’s physically challenged.

“I may be slow but I’m getting there,” is his mom, Marili van Reenen’s, motto for him. Although he’s six years old he still can’t speak. “We don’t know what he understands and knows,” Marili (33) says.

“My boy is a little fighter and doctors are astonished at his progress, giving the fact that he has endured all the hospital dramas. Antoni proves he has will-power. He can sit, roll over and push himself up to walk with support.”

Read more: What 25 years of caring for my disabled son has taught me

Antoni suffered injury during birth and his family is suing the hospital, the paediatrician, gynaecologist and anaesthetist involved in his birth.

Marili’s gynaecologist was on leave and his partner treated her. She went into hospital at 39 weeks (a normal pregnancy is 39 to 40 weeks). She was told to wait until her water broke but nothing happened.

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On the morning of 6 January six years ago she didn’t feel well and went to hospital. She lay there all day and her gynaecologist arrived at only 11.30 pm and Antoni was born by Caesarean.

An intubation tube that was too big punctured Antoni’s respiratory tract. His lungs collapsed. Then during the trip from theatre to ICU the oxygen tube came loose, leaving Antoni without oxygen that he desperately needed. There was no incubator.

The next morning he was transported to Tygerberg Hospital for the insertion of a tracheotomy tube that would allow him to breathe. The oxygen shortage had caused vocal cord paralysis and brain damage.

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He was allowed to go home to his parents, Marili, and Mauritz (37) only four months later. They knew their lives had changed for ever, but they were determined not to have him admitted to a care unit. From the start they wanted him to grow up at home.

“I’m involved with him 24 hours a day. He still has to sleep with me because he has fits and during the night his tracheotomy tube gets blocked and has to be cleaned,” Marili, a mom of two, says tiredly.

PHOTO: Facebook PHOTO: Facebook

“I had a nursery school before the birth of his little sister.”

Since then she’s suffered from post natal depression and it takes every ounce of energy she has to keep going.

“I love children and would love to manage a crèche but I need help to look after Antoni.”

They will have to take him to a physiotherapist at least three times a week to help him make progress, but their hospital plan doesn’t cover all the therapy.

At least they were recently given a walking frame. Many people have been good to them and helped them but quite a few made empty promises.

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Marili has to keep an eye on the tube through which Antoni breathes. His two-year-old sister, Lea-Marié, has fiddled with it and Antoni has learnt how to pull it out.

Since he was four they’ve been looking for a school for children with special needs, but haven’t found a place for him. Because of his tracheotomy tube he’s not a candidate. He would have to have a facilitator to help him in class.

But that would be expensive.

With the help of the Department of Education Marili is receiving training in how to teach Antoni and equip him with the necessarily skills at home.

The big challenge is to provide and pay for therapy such as speech therapy, horseback riding therapy and swimming which will benefit him immensely.

“My biggest dream is to provide these services to Antoni, to find willing people who are patient and caring to assist in any way so that he can be stimulated to his full potential,” Marili says.

Her husband is an auto-electrician who goes to people’s homes or businesses to repair their vehicles. They’re not assured of enough money every month to keep Antoni and Lea-Marié healthy and happy.

They’re considering stem cell treatment in India or the reconstruction of his airway in Boston, America. But this could cost millions.

“We have taken care of Antoni for so long that it’s difficult to ask anyone for help.”

To learn more about Antoni and to help him, go to his website.

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