A News24 Mother's Day special: Progeria brings together two mothers from diverse backgrounds

2017-05-14 16:25
News24 visited Beandri Booysen's family.  The only known South African living with Progeria. (Amanda Khoza, News24)

News24 visited Beandri Booysen's family. The only known South African living with Progeria. (Amanda Khoza, News24)

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Johannesburg – Motherhood, under normal circumstances, is no walk in the park.

But when you're raising a child with progeria, a rare premature ageing disease, motherhood can be a daily struggle.

Just ask two South African mothers from diverse backgrounds whose unlikely bond is helping them cope with the tribulations of raising daughters with this condition, also known as Hutchinson-Gilford Progeria Syndrome, which affects 148 children in 46 countries around the world, according to the Progeria Research Foundation.

Bella Phalatse and Bea Booysen, both 46, are from completely different worlds.

They were brought together by their daughters who became friends after realising that they were among a handful of South Africans who have progeria.

The women's daughters Ontlametse Phalatse, 18, and Beandri Booysen, 11, carved a friendship that was only separated by death.

Phalatse, who was diagnosed with the rare disease between the ages of four and six, died unexpectedly on April 11, a day before her mother and President Jacob Zuma celebrated their birthdays.

On that day Ontlametse had gone to town with her mother, Bella, to fetch a tailor made outfit which she was going to wear at Zuma’s birthday celebration, the following day, where she had been invited as a special guest.

Unfortunately she did not make it to the party and she died from lung failure later that day.

The family of late Ontlametse Phalatse and her friend,  Beandri Booysen,  were this week treated to a special Mother's Day spa treatment. (Supplied)

Before she died Ontlametse asked her guardian, Dr Babalwa Funda kaMabhoza, if they could plan something special for Mother’s Day for her family and the Booysen family.

The weekend away was planned but Phalatse did not live to see it come to fruition.

On Saturday, both families arrived in Mpumalanga, for a weekend of relaxation.

KaMabhoza, a trustee of the Ontlametse Phalatse Trust, said the special day for both families was planned before Onltametse’s death.

“So the plan was to travel to all the provinces around the country, two African countries a year and do one international trip for both families.”

KaMabhoza said Mpumalanga was the easiest province to visit first because she knew the owner of Flycatcher Castle in Graskop, Manie Connoway, and when she called him he allowed both families to visit.

“The plan was to make these two mothers feel special on Mother’s Day.”

Before Ontlametse died, kaMabhoza asked her what she wanted and she told her that she always wanted a massage.

KaMabhoza managed to secure the Sanibonani Resort where the women and their children were pampered at the weekend.

“Ontlametse passed before the trip but we decided not to cancel the trip just to make the mother feel good. I think Ontlametse’s mom is doing much better - she is at peace that Ontlametse is no more.”

KaMabhoza said the owner made Ontlametse and Beandri special dresses that came with tiaras but Onltametse’s dress laid there untouched on the trip.

“That was sad to see,” said kaMabhoza.

Ontlametse Phalatse's mum,  Bella,  holds a dress that Ontlametse was meant to wear this weekend during the Mother's Day celebrations at the Flycatcher Castle. (Louisa Matthee)

 Ontlasmetse’s mother, Bella, said although it hurt that this was the first Mother’s Day without her daughter, she would use the day to celebrate her daughter’s life.

“I am healing, taking things one step at a time.”

Phalatse said last year her daughter took her to Spur for Mother’s Day and gave her sunglasses as a gift.

“The day is not that bad, but I miss her and always will miss her every day. It feels like it all happened yesterday.”

Phalatse said her daughter would be proud that she went along on the trip.

“She wanted me to live life and not be depressed forever. She would love for me to live each day celebrating her life. I think she would be proud that I am here and that I enjoyed my day with the Booysen family,” said Phalatse.  

When asked what kind of mother it took raise a child with progeria she said, “You have to love your child before anyone else and tell them that they are perfect the way they are”.

Phalatse thanked all South Africans who loved Ontlametse and showed her family support during the difficult time.

“I really appreciate it,” she said.

Before the weekend away, News24 spent the day with the Booysen family at Kota Joe in Pretoria where Beandri’s favourite milkshakes and swing chairs can be found.

Her mother Bea, said in 2005, when she heard that she and her husband, were expecting a daughter after their three sons, Jaco, 28, Herman, 26, and Rube, 18, they were thrilled.

Jaco was 16, Herman, 14 and Ruben, 7, when Beandri came home for the first time.

The three boys were excited to see the beautiful baby girl, but were shattered when after three weeks their parents noticed something was different about the baby.  

“She had little bubbles on the skin on the stomach and it was not flat. At six weeks I took her to the paediatrician for a check-up and she said she had not gained a lot of weight, and I told her that not all babies were fat.

“She said she would investigate why Beandri’s skin looked like that, but two weeks later, she still did not know what it was…

“I called my mum in tears and she said I should go to the university and talk to [a doctor] and she took photos of Beandri, asked about the family’s medical history and told us that she would run tests and get back to me.”

Bea said no family member had progeria before Beandri.

At six months Beandri still looked like a normal baby, with blue eyes and a head full of hair.

“At about 11 months [the doctor]... called and said she wanted me to bring Beandri so that they could draw blood because they thought they knew what the disease was. They took the blood for testing in Germany because they could not test it here.”

After Beandri’s first birthday and a week before she was baptised the doctors told the family that she had Hutchinson-Gilford Progeria syndrome.

“I burst into tears and my husband was fine. He knew already that the results were positive.”

Beandri Booysen and her parents,  Bea and Pieter. (Louisa Matthee)

From that day onwards the family decided to take it one day at a time.

“We decided not to be negative or ask why, why because it does not help to ask questions.”

Bea said although Beandri was different, the family tried to offer her a normal childhood.

“At the age of two when her hair fell out she would pull it out.”

In 2012, grade one, Beandri suffered a stroke while she was at home.

“It was major, her whole right side was numb and now she does everything with the left-hand side. She is better now but we must remind her to use the right side as well. We tell her to use both hands and since then she has been getting physiotherapy and hydrotherapy. She is still getting physio so that her hips do not dislocate.”

Unlike young girls her age, Beandri cannot enjoy the simple feeling of walking bare foot because her skin is thin and sensitive.

Once she is done bathing, she calls out to her mother to help her out of the bath tub.

“She also needs help in the toilet, in public toilets, the basins are too high. She is like a four-year-old but she is 11. She is still sleeping our bedroom, I won’t allow her to sleep in another room, I feel comfortable that I can see her.”

At school, the grade six pupil at Laerskool Pierneef, initially used a wheelie school bag.

She asked her mother if she could get a backpack like all the other children and her mother told her that she would not be able to carry one.

In grade four Bea bought her daughter a caddie, a plastic suitcase that she pulls around.

“In school there are about four steps, the school children carry the bag and then she is off.”

Beandri was enrolled at the Progeria Research Foundation in Boston in the United States of America at the age of four.

“She has been on the drug trials and last year December she started the new drug phase. They always do follow up tests - blood and urine.”

The family have been to the foundation more than four times.

“They give you medication which I believe works. The new medication has side effects but it is manageable.”

On this special Mother's Day,  News24 celebrates the lives of mothers who have to raise children living with Progeria, a rare ageing disease. (Amanda Khoza, News24)

On Ontlametse’s untimely death, Bea said on that Wednesday morning she was sitting in her bed when her husband called and told her that colleagues were saying that Ontlametse had died.

“I thought it was fake news and then I called Dr Hanlie and she confirmed that Ontlametse had died. I cried my eyes out and Beandri was still asleep. I told her when she woke up and she did not take it well.”

Bea’s hope is for her daughter is for her to grow very old and grow hair.

The only known South African living with Progeria,  Beandri Booysen, enjoying a spa treatment at Sanibonani Resort. The special weekend was planned before Ontlametse Phalatse died. (Supplied)

“Every time one passes away, you get shivers down your spine because you ask yourself, how long how long [do you have with your child?].”

On what it takes to raise a child living with progeria she said: “When things get tough I pray… I am an introvert just like Ontlametse’s mom. You have to be positive and strong for the child. It is like raising any child with a disability, if you are going to crack, what is going to happen to her?

“It is not easy, I cry in my alone time and then I feel better.”

Bea's three sons and daughter wished her a happy Mother’s Day saying.

“I love her very much. That is all,” said Beandri.

Read more on:    ontlametse phalatse  |  pretoria  |  health

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