“Seeing our son this way is both horrifying and satisfying,” are the words said by Leandra and Dirk Smit of Grobler Park as they describe the last 14 months with their son Dantè.
This is because Dantè is not like any other 14-month-old baby – he has a rare genetic syndrome called Schinzel-Giedion syndrome.
For the first three months of his life, doctors were uncertain what was wrong with Dantè, who spent his first month in hospital. Tests only confirmed the real cause of his condition last month.
At first, despite numerous tests and scans, doctors could not figure out what was wrong with him. Then one doctor started going through his previous tests.
He found that Dantè was born with 4 kidneys and a double ureter, and hernias in both his testicles that allowed parts of his bowel to move into his testicles, causing severe swelling and pain. He also realised that Dante did not have just one cyst on his brain – there were two. He found that parts of Dantè’s brain had never developed, because of the cysts which were inside two of the enlarged ventricles, causing increased internal pressure.
“It is a stressful situation to be in, but we have to be strong. We are taking every second as it comes because at times we don’t know what to expect or what will happen to him. Fortunately, our families have been very supportive in their own unique ways. When Dantè is in hospital for example, Dirk’s sister, Lizanne Smit, looks after our oldest son Teegan,” said Leandra.
She said the ordeal was heartbreaking because she lost another son five years ago, a few days after his birth, due to pneumonia. It has since been found that the second son, named Talen, also had the rare genetic syndrome. The syndrome compromises the immunity system and makes sufferers vulnerable to hospital viruses and other illnesses.
“It is horrifying seeing my son go through what he is going through every day, but at the same time it’s satisfying, because we appreciate every second with him. I never thought I’d fall pregnant and have another child. We don’t know how long we have with Dantè, so he is a blessing in our lives,” she said.
However, Leandra and Dirk have been inspired by the courage and strength shown by both their sons, which has pushed them to feel positive despite their current problems.
“I don’t believe God would have put us in this situation if there was no reason but I still ask why Dantè has to suffer. Sometimes I worry about my oldest son Teegan who is still a child and needs attention. But now with everything happening it’s difficult. All he wanted was a little brother to play with. It breaks my heart, but Teegan has been strong throughout the situation,” she said.
The family’s day-to-day medical aid funds ran out at the beginning of February this year. Although Danté is still covered for in-hospital expenses, any treatment outside the hospital is not covered. Expenses such as scans, blood tests, chromosomal tests, doctor’s appointments, physiotherapists, occupational therapists, genetic doctors, medication and other tests are no longer covered.
“Pride is everything to us. The first year of Dantè’s life we kept to ourselves and tried to deal with it on our own. We didn’t know what the syndrome was and we feared that we would be judged as unfit parents. But that’s what pride does. Our lives revolve around our children, however we have found things are getting tougher. Our eldest son’s school fees need to be paid and he has other extra-curricular activities that he’d like to participate in but he can’t, because we cannot afford it,” said Leandra.
This is why their friends Mishce Kelly-Otto and Astrid Guntenhoner have been working hard, organising fundraisers for the family.
“We didn’t realise how much of an impact Dantè had made, not only on those around us, such as our friends and family, but even on members of the community who have never met him but have been praying for him and wishing him better health. The last 14 months have been hell and sometimes people don’t understand what we go through every day, but I try to do as much research as I can, even if it just makes his life a little bit better,” she said.
Leandra and Dirk are now planning to start a foundation that specifically deals with the syndrome so that others who might find themselves in the same situation can at least have a reference point when seeking help or ideas to help their little ones.
https://www.youtube.com/watch?v=Fo8fUIJssdE&feature=youtu.be
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