'Franjes death leaves a hole in our lives'

Update

GARDEN ROUTE NEWS - Former Miss SA and Miss Universe, Demi-Leigh Nel-Peters, and her family will be paying their last respects to her baby sister, Franje (13) tomorrow, Friday 10 May. This is also the birthday of their father, Bennie Peters.

Franje passed away last Saturday afternoon after a long battle with the extremely rare condition cerebellar agenesis. She was born without a cerebellum, severely limiting her ability to walk, talk and develop as most children would.

"She could not walk, talk or sit on her own. Even her swallowing was affected so she had a feeding tube directly into her stomach," said her father. According to Bennie, Franje was admitted to hospital on Tuesday 30 April. Tests confirmed that she had viral pneumonia and she was placed on oxygen to support her breathing.

"Due to it being a viral infection, she couldn't be treated with antibiotics. The body had to fight it. Franje was very weak and she became worse by Friday. Her doctors decided to sedate her with morphine on Friday night. Franje passed away peacefully on Saturday afternoon at 13:35," said Bennie.

Demi-Leigh Nel-Peters (left) with her sister, Franje Peters (13), their father, Bennie and Franje's mother, Elzabé.

The impact of cerebellar agenesis on a family
Bennie told the George Herald the condition is so rare that there is hardly any research available. Franje was diagnosed four months after birth. Nothing was noticed during pregnancy.

"It had an immense effect on our family. You arrange life to accommodate your child's situation in everything you do. Franje needed 24/7 care, therefore we had to take turns so that there was always somebody with her. During the 13 years we cancelled so many holidays, etc. because Franje was in hospital. There were times that a young Demi flew from George to Johannesburg to go on holiday with us, but ended up helping us looking after Franje. That is something that will always stand out for us - Demi loved her little sister so much she never ever complained about a cancelled holiday," said Bennie.

Demi-Leigh Nel-Peters and her fiancé, Tim Tebow, with Franje when they visited South Africa in February.

A bereaved father's words
"The second worst day in the life of a parent with a handicapped child is the day the child is diagnosed. The worst day is when this child is called up to Heaven. The hole Franje's death left in our lives is so big that I am not sure if we'll ever be able to fill it. She never cried. She was a quiet girl, but with a very strong presence.

"She didn't like being alone. She had the softest hands and most of the time she slept between us for the biggest part of the night. We miss her so much already. We will never ever forget Franje and the effect she had on our lives."

Franje was a happy girl despite her condition.

Funeral arrangements
Franje's funeral will be held in Klerksdorp on Friday morning. Demi-Leigh will also be attending. The last time she saw her sister was when she visited South Africa in February.

"We had a chat to Demi during December after Franje was hospitalised again, explaining the seriousness of Franje's condition to her. With the distance that she has to travel, she had to realise that every time she saw Franje might be the last time," said Bennie. "Demi visited South Africa during February and it worked out that she was here for Franje's 13th birthday. It was so special."