I want to be the oldest person living with progeria says tiny giant, Beandri Booysen

2017-05-15 17:57

Pretoria – The only known surviving South African living with progeria, Beandri Booysen, has no desire to meet President Jacob Zuma or any famous South African for that matter, her dream is to become the oldest person living with progeria in the world.

The 11 and a half-year-old from Doornpoort, Pretoria, is certain that she will be the oldest person living with progeria and by the time she turns 29, she hopes to have gotten married, given birth to twins, have her dream job of being a teacher and drive a Mini Cooper - her favourite car.

On Mother's Day, News24 celebrated the lives of mothers who have to raise children living with Progeria, a rare ageing disease. News24 visited Beandri Booysen's family - the only known South African living with Progeria. (Amanda Khoza, News24)

News24 caught up with Booysen and her family before a weekend away in Mpumalanga, planned by her late friend Ontlametse Phalatse and her guardian, Dr Babalwa Funda kaMaboza.

Phalatse, a long-time friend of Booysen, who also had progeria, died suddenly at the age of 18 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, 46, to fetch a tailor made outfit which she was going to wear at Zuma’s birthday celebration, 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.

News24 met a very shy Booysen at her favourite milkshake stop, Kota Joe in Pretoria. This is where her favourite swing chairs can also be found. The young lady who is fast approaching her teens only weighs 12 kilograms.

Unlike young girls her age, Booysen 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, and in public toilets, the basins are too high.

Her mother Bea, 46, previously told News24 that caring for Booysen was like caring for a four-year-old.

Booysen still sleeps in her parents' bedroom because her mother can't let her sleep alone.

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

At school, the grade six pupil at Laerskool Pierneef, initially used a wheelie school bag, but one day 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 she has to navigate. Other pupils school help her carry the bag over and then she is off. 

Despite all the limitations, her family tries by all means to ensure that Booysen leads a normal life. "I want to be a teacher because I love children, I want to make a difference in the lives of other children," Booysen said.

 On her immediate dreams, Booysen said she wanted to go to the Afrikaans is Groot Show. "In 2014, they surprised me and sang for my birthday, but I want to go back there."

When asked if there was a famous South African she would like to meet, she shook her head. She then remembered something, saying: "Oo oo oo, I want to go to New York, I want to go see all the nice buildings. I also want to go to Paris," she said in Afrikaans.

She mentioned three of her best friends, and when asked what made them such good friends, in Afrikaans she replied, “Mom, I don’t know what to say."

Bea interjected saying she thinks the girls had been friends since grade one and two.  

When asked what made her a good friend, she said, "I am loving, kind, a go getter, positive, I get things done and I sort out all my friends' problems. I get my way but not all the time."

She said she was not spoilt and her mom was sometimes strict.

Owner of Flycatcher Castle Manie Connoway, Dr Babalwa kaMabhoza and Beandri Booysen, enjoying a pre Mother's Day celebration. (Louisa Matthee).???

'Too painful'

Speaking about her late friend, Ontlametse, Booysen said: "My WhatsApp status says that I miss Ontlametse. We used to talk all the time on WhatsApp, she used to put our pictures on Instagram and she motivated me a lot."

It was the picture of a sobbing Booysen that captivated and broke South African’s hearts during Phalatse’s memorial service. She did not attend the funeral service.

"I did not go because it was too painful, not because I did not want to attend. I loved her but I did not want to cry anymore."
Booysen said Phalatse’s death shook her and scared her.

"I feel very sad, it was scary. I am now scared that I will not get old as well."

Booysen said she wants to live until the age of 29.

"I want to finish school, I want to go to the matric farewell with my crush, I want to be a teacher, I want to have lots and lots of money so that I can get new clothes and go out to the movies. I also want to get married and have twins."

Booysen said she sees herself getting married at the age of 25.

"My favourite car is a Minnie Cooper. I am going to get a license and get one - that is all."

Booysen also said she wanted a long blonde wig that will go down all the way to her bottom.

During the interview, a distracted Booysen asked her mother in Afrikaans, where are they were going to next.

She often glanced at her bright pink watch.

Booysen told her mother that she wanted to go to PNA Books to look for a diary that needed a pin to unlock so she could keep all her secrets safe.

Her mother reminded her that she was still doing an interview.

The family of late Ontlametse Phalatse and her friend, Beandri Booysen, were treated to a special Mother's Day spa treatment. Before Phalatse died,  she told her guardian, Dr Babalwa kaMabhoza, that she had always wanted a massage. A trip to celebrate Mother's Day in Mpumalanga was arranged but Ontlametse died suddenly and could not make it to the special day. (Supplied)

'Shivers down your spine'

Concentrating again, she was asked if people had hurled insults at her because of the way she looked and she said, "The one child said, 'mama, mama, look at the alien,’ another one said I am a boy and in the shops I tell my mom to stand in between me and people that are staring."

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

Her mother said it was so severe that her whole right side fell numb.

Now that she has recovered, her family often has to remind her that she also has to use both her left and right hand sides.

She has been doing physiotherapy and hydrotherapy since then.

When Bea and Pieter heard in 2005 that they were going to have a baby girl after three sons, they were thrilled. Their sons Jaco was then 16, Herman, 14 and Ruben, 7, when Booysen 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.  

Bea said: "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 Booysen.

At six months Booysen still looked like a normal baby, with blue eyes and a head full of hair, her mother said.

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

Bea said, "Every time one [a child with progeria] passes away, you get shivers down your spine because you ask yourself, how long how long [do you have with your child?]."

Beandri Booysen and her mum, Bea. (Amanda Khoza, News24)

Booysen 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," her mother said.

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

Her brothers did not particularly take it well when they found out that their sister had a rare disease.

Herman, 26, said even though his sister was different, he grew to love the "little person with a giant attitude".

However, Jaco, 28, fell into depression and became a drug addict for ten years because he could not deal with the way his sister looked. But today, he is clean and they are inseparable.

Ruben, 18, said while growing-up, he often had to fight for his mother’s attention because she always cared for Booysen the most.

He became so angry and confused that he had to be sent to a psychologist but he and his mother eventually sorted things out and are now the best of friends.

Booysen told her mother that when she dies, she wants to be cremated and for her ashes to sit next to those of her grandmother’s in her home. 

Read more on:    ontlametse phalatse  |  pretoria  |  health

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