Raphael, 12, who died of cancer

 Raphael and his parents, Mrs Winnie Lee and Mr William Lee, in the ward before Raphael underwent surgery to amputate his left forearm.

TOUCHED MANY WHO KNEW HIM

Mr William Lee said that he and his wife were surprised that so many people turned up to attend Raphael’s wake, including many people they did not know but had been moved by what his son had been through.The livestream of Raphael’s funeral drew 1,000 viewers, which has ballooned to 7,000 as of a couple of days ago.

He will be remembered as an active child with many interests, who loved to assemble Lego models and take part in robotics competitions. Friends also said that he was a whiz at video games.

Mr Lee said that he will miss the way Raphael would greet him when he returned home and the banters they used to have.

Mrs Lee said that she will remember the times she and Raphael would sit together in their living room and watch television together, and how he used to help out in the kitchen.

His last gift to his parents, to commemorate their wedding anniversary, was a Lego model of their family. The figure depicting Raphael is without a left arm.

The Lego model sits atop a counter in their living room, along with Raphael’s other models, accolades and photos of him.

“He has left traces of himself in every corner of the house,” Mrs Lee said.

‘HE ALWAYS PUT OTHERS BEFORE HIMSELF’

Raphael’s parents and those who knew him said that he was a thoughtful child who always put others before himself.

Mrs Lee recalled how in the last two months before he died, Raphael had grown weak and struggled to climb the stairs up to his classroom at school, which was on the seventh floor.

By the time he got to the second floor, he would already be winded and out of breath, she said.

After raising it to his teachers, they made arrangements for him to be accompanied by an adult to take the elevator. They also offered to assign him a buddy to help carry his heavy bag.

But Raphael refused the help.

“He was telling me not to trouble the teachers because they already have their own responsibilities,” Mrs Lee said.

He also turned down his friends’ help, saying that they, too, have their own heavy bags to carry.

Instead, he asked his mother to take him to school earlier so that he can slowly climb up the stairs and still have time to play and talk to his friends.

When Mr Lee, who also has the rare genetic Li-Fraumeni syndrome, was diagnosed with Stage 2 colon cancer in August, Raphael had asked his mother why he could not have the cancer instead.“

He said to me, ‘Mummy, why is Papa having cancer? Why not give the cancer to me instead?” Mrs Lee recalled.

Mr William Lee, a course manager with non-profit organisation St John Singapore, said: “When I heard of this, I told him, 'You’re silly… It’s been easy to tell you to be brave and strong, now it’s my turn to lead by example'.”

 Ms Amy Tong, 50, who is a church mate of the family at the Church of St Bernadette, said that Raphael would often not want others to know about the pain he was experiencing because he did not want others to worry about him.

Ms Tong said that her own 12-year-old son has not yet come to terms with the fact that his friend from Sunday school is gone.

“He said he just wants to pretend that (Raphael) recovered and God rewarded him with a stay in heaven,” she said.

Raphael undergoing chemotherapy after his left arm amputation procedure in 2017. 

LIFELONG BATTLE WITH CANCER

Raphael had a rare genetic condition that greatly increased his risk of developing several types of cancer.

His long struggle with cancer began when he was just eight months old and his family discovered that he had a lump on his left forearm.

Doctors later confirmed that he had rhabdomyosarcoma, a rare form of soft tissue cancer. After rounds of radiotherapy, chemotherapy and surgery, he went into remission.In 2016, when he was in Primary 2, his cancer came back. This time, a lump was found in his left forearm and he was diagnosed with osteosarcoma, also known as bone cancer.

A year later, he had to amputate that forearm because cryotherapy was not enough to get rid of the tumour.Though he was initially devastated, Raphael quickly rolled with the punches and cheered those who visited him after his operation, his parents said.

Doctors later found a tumour in his right collarbone in 2019. Surgery successfully removed the tumour, but earlier this year 2020, in March, the doctors found that the cancer had spread to his lungs.

It was during the second operation to remove the tumours that Raphael died.

His parents said that ultimately, they felt that Raphael left them at a good time because the results of a biopsy they received last Wednesday showed that tumours in other parts of his body had mutated, which meant that he would have had to go through more rounds of treatment.

“We’re glad he left us in this peaceful manner… Rather than when the tumours in the bones develop further and spread. We don’t want to see him die a painful death,” Mrs Lee said.

Their son died before he could get to see his Primary School Leaving Examination (PSLE) results, and his parents, Mr William Lee and Mrs Winnie Lee, had this message for other parents.

"Academic results may be important for better prospects in career development, (but) what is more valuable is the time spent together with your children, especially in their growing-up years,” they said.

“Do spare a thought for their social and emotional needs. Be generous and sincere with your compliments as these are adrenaline that will push them forward.

" Do not show your fear in front of your child for he or she is clinging onto you for support.”

Mrs Lee, 45, and Mr Lee, 47, were speaking on Sunday (Nov 29, 2020) after the story of Raphael, their 12-year-old son who had to battle with various cancers since he was eight months old until his death, touched many among the general public.

They were not even aware that the life and death of their son had elicited such a huge public reaction. 

The Lees said that it was their son’s wish to sit for the PSLE and graduate with his schoolmates before he went for the operation on Nov 12,   to remove the cancer in his lungs.

The Alexandra Primary School student died due to complications from the surgery, before he could collect his results.

His parents did so on his behalf last Wednesday. Raphael scored 220, attaining As for mathematics and science, and Bs for English and mother tongue.

Asked how it felt to receive the results on his behalf, Mr and Mrs Lee said that there was a bit of suspense on how their only son would fare.

Still, given Raphael’s disrupted schooling years, the pair believed that it was already “  simply amazing” that he even sat for the exams.

“Even if he failed or did not qualify for the Express stream, to us, it’s okay,” Mrs Lee said. 

(To understand the Singapore latest PSLE streaming system click here) 

“Because deep down inside us, he has already passed his test of life with distinction and flying colours.”

Mrs Lee, who left her job as a childcare teacher in 2019 to care for her son, added: "We are simply proud of him. If he was still with us today… both of us would be jumping for joy.”

Mr William Lee and Mrs Winnie Lee with their son Raphael’s last gift to them, a Lego model of their family. The figure depicting Raphael is without a left arm.

Raphael Lee has battled cancer since his birth

He was diagnosed with a rare condition that greatly increased his risk of getting cancer

He died on Nov 13, 2020, before he could collect his PSLE results

Those who knew him said he always put others before himself