Strangers raise $400k for dying girl.. but it came too late

Little Nur died early yesterday without knowing how many hearts she touched in the short four years and three months of her life.

She will also never find out how many strangers she moved to raise over $400,000 in just over two weeks in the hope that she may live.

Last month, The New Paper ran a report on four-year-old Adlea Ry'Kyla Muhammad Ghazali, known affectionately as Nur.

The little girl was suffering from dilated cardiomyopathy, a condition in which the heart becomes weakened and enlarged and is unable to pump blood efficiently.

When The New Paper on Sunday spoke to her mother, Madam Norleen Osman, 33, a housewife, in mid-May, she said that only "six per cent" of Nur's heart was still functioning.

Nur was given weeks to live if a new heart could not be found.

She died in KK Women's and Children's Hospital (KKH) at 3.40am on Saturday when her heart failed.

Her father, Mr Muhammad Ghazali, 27, a security supervisor, told The New Paper on Sunday: "It was so sudden. She was okay (on Friday).

"I was with her (when she died)."

The news came as a huge blow for Nur's parents, who have three other children, sons aged 16, 14 and one.

Things were looking up for the little fighter just before she died.

Barely time to rejoice

On Friday afternoon, Madam Norleen had posted an update bearing good news on her Facebook page.

She wrote that although Nur was still being treated, "the good news is the bacteria for her open wound on her ankle has subsided and her appetite has increased".

Nur had been nursing a foot infection before she underwent a two-hour procedure on May 21 to remove the infected tissue on her foot.

Madam Norleen added that they had written to four hospitals and medical centres in the US, asking about the possibility of a heart transplant for Nur.

In her post on Friday, she said: "Earlier this morning, we also just got in touch with a representative from the (Montefiore Medical Center) in New York and in the midst of doing fact-finding with them as well.

"If suitable, we will submit a formal application (as soon as) possible."

Just hours before Nur's death, they had received a positive response from the Montefiore Medical Center, which said that they were happy to take Nur, said MrGhazali yesterday.

But they barely had time to rejoice. Nur died unexpectedly.

The news of Nur's passing spread quickly among friends, relatives and well-wishers who had rallied behind her.

Some had turned up as early as 7am at her parents' two-room flat in Ang Mo Kio to bid farewell to her.

By noon, a crowd of about 60 had gathered at the flat.

Strangers turn up to mourn her passing

Before Nur's tiny body left for the mosque at 1.30pm, family members touched and kissed her as a final farewell.

Madam Norleen could not resist giving Nur several kisses before saying her final goodbye.

At Choa Chu Kang Muslim Cemetery, rain clouds gathered overhead as the crowd swelled to about 120. As workers filled Nur's grave with red earth, Madam Norleen held on to her husband tightly.

Clutching a plastic bag filled with flowers, Madam Norleen fought hard to hold back her tears. Then she scattered the flowers over her little angel's grave.

For many of those who turned up at the funeral, such as Madam Ellyna Zalien, it was the first and last time they saw Nur.

Madam Ellyna, 47, told The New Paper on Sunday that although she did not know Nur or her family previously, she was moved to act after hearing about Nur's plight.

Her whole family had volunteered for a concert at Bishan Park last Sunday to help raise funds for Nur.

Said Madam Ellyna: "I was saddened by her suffering at this young age. She touched other people's hearts.

"Even though we are not related to her as a family, we're related as fellow human beings."

She cried when she found out yesterday morning about Nur's death over Facebook, and decided to make the trip from her home in Redhill to Ang Mo Kio and then to the mosque and Choa Chu Kang Muslim Cemetery to accompany Nur on her last journey.

She said: "I thought I had to go and see her for the last time."

Condolences

Associate Professor Wong Keng Yean, senior consultant of KKH's cardiology service in the department of paediatrics, sent his condolences to Nur's parents and family in a statement issued yesterday evening.

He said that Nur had been a patient of KKH since 2008.

Since then, he said that "KKH has been with the family every step of the way" to provide all possible support, including checking and liaising with leading transplant centres overseas on various care and treatment options for Nur.

"Adlea's condition was extremely critical and complex, and treatment options were limited," he added.

"We are saddened by Adlea's passing. We will continue to try and provide assistance and support to the family where appropriate and needed, just as we have been doing so while Adlea was under our care."

Ms Mavis Teo, KKH's senior principal medical social worker, added that apart from the full assistance from Medifund to cover Nur's medical bills, KKH has also used its own Health Endowment Fund to support the family for additional non-medical expenses, such as her special dietary requirements.

She said: "The family's additional expenses were also supported by KKH's medical social workers who arranged for a monthly family maintenance grant from the Singapore Heart Foundation.

"The hospital's Paediatric Palliative Care Team worked closely with the family to support them through this difficult time." Ms Teo added that the hospital would continue to follow up with the family to extend bereavement support.

The Ministry of Health was "sad to learn about the passing of Adlea and our thoughts are with the family during this difficult time", a spokesman said.

He added that the ministry would continue to work with KKH to help the family.

Fund raising initiatives to continue

What they could not do for their child, they now hope to achieve for orphans and other children battling critical illnesses.

Nur's parents made this pledge amid their grief yesterday.

Her father, Mr Muhammad Ghazali, 27, a security supervisor, said that these were their preliminary plans and they would share more details soon.

Since The New Paper's report two weeks ago on Nur's condition, there has been an outpouring of sympathy for her.

Kind-hearted people came up with several fund-raising initiatives to help pay for a heart transplant overseas.

More than $400,000 was raised for Nur's heart transplant in less than three weeks.

The efforts to collect donations for her transplant included an online appeal which led to more than $300,000 being collected, a cycling event and a 12-hour concert in Bishan Park.

There were more events being planned for Nur, including a charity football game at Bedok Stadium at 4pm today and a charity concert-cum-celebrity football match at Woodlands Stadium next Sunday.

Former Singapore international Rafi Ali said that the charity match today will go on despite her death. It will now be held in memory of Nur.

As for the concert-cum-football match next Sunday, Mr Saharuddin Abdul Jalil, 47, a representative from the group Malay Youth Performing Art (MyPart), which is one of several organisations behind the event, said that there will be a meeting among the stakeholders today to discuss the matter.

Mr Muhammad Azrie Halimi, 26, an avid cyclist, told The New Paper on Sunday that he and six other cyclists organised a cycling event last Sunday in which 300 cyclists raised $3,570. Is he disappointed that the money raised could not save Nur?

The multimedia executive said: "Nur was admitted to the hospital. They can use the money to pay the bills. It's for a good cause."

'A million dollars would not bring back little Nur'

When told of the family's plans to donate the money raised to others, Mr Azrie said: "They are good people who think of others and not themselves."

Mr Olly Ismail, 36, an events coordinator, was one of the organisers for the One Heart Music Showcase 2012 in Bishan Park last Sunday. The concert raised more than $42,000.

Mr Olly said he hoped Nur's family would use the money for her hospital bills and also to help them over this difficult period.

He said: "For them, even a million dollars would not bring back little Nur."

If there is one parent who would understand what it is like to lose a child despite all the fund-raising initiatives, it would be Ms Cynthia Lim.

Ms Lim, 32, who works in the finance industry, is the mother of six-year-old Charmaine. Charmaine lost her two-year-battle with advanced neuroblastoma, a cancer that occurs in infants and children, last October.

The New Paper wrote about how she, her brother Jase and their divorcee mother were desperately trying to raise money to go to New York for treatment.

Singaporeans raised the $500,000 required for the trip within three weeks - despite slim hopes of success.

Could the money have been used to help a greater number of stricken children?

She said: "I can understand the rationality about how my half-a-million could be used to feed many children in Africa.

"But those kids are not my kids. Even if it's just one kid, she's my kid. As a parent, I would give my all to save my kid.

"Charmaine was able to have that chance because there are actually a lot of kind souls in Singapore."

This article was first published in  The New Paper.