Little Nur's only hope is a new heart
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Let's do our part and share this with the rest. A little goes a long way. Let's give little Nur a new hope of life. USD$200,000 needed By June 8, 2012.
My heart goes out to her. Our prayers are with you. Stay strong Little Nur!
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By Daryl Yam
The New Paper
Friday, May 25, 2012
When The New Paper visited Madam Norleen Osman's one-room flat in Ang Mo Kio a week ago, the child sleeping in the middle of the room started to cry.
When Madam Norleen, 33, propped up the little girl on her lap for the interview, she would not stop screaming.
The housewife felt the need to apologise on her only daughter's behalf. She and her 28-year-old husband also have three sons, aged 16, 14 and one.
"I'm sorry," she said. "She's on morphine right now. She's very cranky."
Four-year-old Adlea Ry'Kyla Muhammad Ghazali, known affectionately by her loved ones as Nur, was diagnosed with myocarditis in 2010, when she was admitted into KK Women's and Children's Hospital (KKH) for vomiting blood.
Myocarditis, simply put, is an inflammation of the heart, commonly caused by a viral infection. (See report on facing page.)
Nur was just a year and seven months old then.
Now, only "six per cent" of her heart is still functioning.
The stark truth facing her parents: Unless Nur gets a new heart soon, she will die.
Said Madam Norleen: "The doctors aren't even talking about years or months. They're talking about weeks."
Nur's only hope is a heart transplant in a country where paediatric heart transplants are not available.
Associate professor Wong Keng Yean, senior consultant of KKH's cardiology service in the department of paediatric subspecialties, told TNP that there is currently "no heart transplant programme for children as young as Nur available in Singapore".
Complications
To complicate matters, her heart inflammation has caused her kidneys to deteriorate, which in turn has caused her abdomen to bloat until her tummy is now twice its normal size.
When Madam Norleen tried to help us photograph Nur's bare stomach, the little girl objected tearfully.
She was so distressed by her condition that she kept pushing her dress down to conceal the tube underneath that is attached to the side of her body.
Every morning and evening, Madam Norleen would remove the plaster around the tube, unscrew the tube and then insert a syringe to drain out the yellow fluid collected in Nur's stomach.
The little girl's bloated stomach, pressed against her other organs, also causes her to suffer from breathlessness, severe pain and a regular fever.
As if this was not enough suffering, she also has a wound on her right foot, the result of a doctor's attempt to attach a drip.
The wound, which became infected, oozes pus.
Nur is now on a daily cocktail of diuretics, morphine and heart medication, and a diet of rice and soup with as little salt as possible.
Said Madam Norleen: "Anything she eats, she will throw up. But she likes chilli a lot and curry too.
"When she was hospitalised at KKH, the nurses even had to add a little curry to her food as a special order."
As Madam Norleen gave Nur a container with a small amount of tomato ketchup, the little girl stopped crying.
"Look at her," her mother said. "She can't resist anything red."
Nur dipped her index finger into the container and licked the ketchup on it.
But soon after, she began protesting again, prompting Madam Norleen to place a container underneath Nur's chin.
Making a few heaving noises, Nur threw up some orange fluid.
During our hour-long interview, she threw up two more times - and all she had had was the ketchup.
With Nur's condition deteriorating rapidly, Madam Norleen's is becoming more desperate for a heart transplant to save her daughter.
She and her husband have sent applications to various hospitals overseas.
They received their first reply on May 6 from the Royal Children's Hospital (RCH) in Melbourne, Australia.
The hospital acknowledged receipt of their application and asked for Nur's scans and medical reports to be sent to them.
They also gave a quotation of A$85,000 (S$107,000) for the expected cost of the heart transplant surgery and treatment at the hospital.
Madam Norleen, whose husband earns $2,200 a month working as a security officer, was worried about how they would raise the money.
But bad news followed when she received an e-mail from RCH last Friday telling her that the hospital is "unable to offer heart transplantation to overseas patients".
The next day, Nur - who had been suffering from breathlessness, jaundice and vomiting - had to be re-admitted into KKH and was warded over the weekend.
Her foot infection has also worsened.
Prof Wong explained that it is "very difficult to set up drips for patients such as Nur due to the severe swelling from heart failure and limited drip access sites".
Dr Arjandas Mahadev, head and senior consultant of KKH's department of orthopaedic surgery, said:
"This infection is a known risk when setting an intravenous line, and may spread in situations of general poor health and immunity."
Last Monday, Nur underwent a two-hour procedure to excise the infected tissue on her foot. She is now warded in the hospital's intensive care unit.
But an e-mail from the Boston Children's Hospital in the US acknowledging receipt of Nur's scans and medical reports has given Madam Norleen another glimmer of hope.
"I just hope she stays strong," she said.
"She's a fighter, I can see."
darylyam@sph.com.sg
| Little Nur needs your help.
Here's the link to the ChipIn page for our little Nur;
http://littlenurheartfund.chipin.com/
Our goal is to raise USD$200,000 for Little Nur's Heart transplant operation.
TO MAKE YOUR CONTRIBUTION:
If you would like to use online payment system (debit/credit cards -- visa/mastercard/amex/discover) please go here >
http://littlenurheartfund.chipin.com/
If you prefer to use bank to bank transfer (ibanking) or cash deposits, please deposit your donation to >
POSB SAVINGS: 247-587-853
(This is a joint account of Nur's parents for the purpose of collecting public's monies for Little Nur's Heart Fund. The same account is being used to collect monies from other charity bodies/organizations/individual donors).
After you made your deposit in the POSB savings account, please sms Mariani at 96446133 with your name, tel no, amount donated and reference number of the transfer so that she can take note and check with Norleen (Nur's mom) to confirm payment is received. Please keep a print copy of your contribution for your own records.
And do share the above information with your family and friends on social networks like Facebook to solicit their participation in this donation drive.
May God bless you for helping us help Little Nur... Thank you, everyone.
Please note that this is an online donation drive... we're not meeting anywhere on June 8th. June 8th is the date we have set to end this donation drive. Little Nur is in pain right now and all we have is two weeks to make a difference.
If you have not read Little Nur's story, here it is... taken from http://www.tnp.sg/content/girl-4-has-weeks-live-unless-she-can-get-heart-transplant
For your reading convenience, a transcription of the entire newspaper article can be found here: http://bit.ly/MJatYX
_______
When The New Paper visited Madam Norleen Osman’s one-room flat in Ang Mo Kio last week, the child sleeping in the middle of the room started to cry. Then she started to scream.
The housewife, 33, felt the need to apologise on her four-year-old daughter’s behalf. "She’s on morphine right now. She’s very cranky,” she said.
Her daughter, Adlea Ry’Kyla Muhammad Ghazali (above), known as Nur, has myocarditis - a rare heart condition. As a result, her kidneys have deteriorated and she has a bloated abdomen, which presses against other organs, causing breathlessness, severe pain and fever.
The only hope for Nur is a new heart, but there is no heart transplant programme here for children as young as Nur.
Now, her parents are looking overseas to try and get her a heart transplant.
For your reading convenience, a transcription of the entire newspaper article can be found here: http://bit.ly/MJatYX
________
According to Mdm Norleen (Nur's mother), the doctors at KKH said that there is almost "no-hope" for Little Nur to survive. They said she has less than a month to live.
Well, we are not going to set an expiry date on this poor child or say that Nur has "no-hope" to live, but we need your help.
FUNDRAISING TEAM MEMBERS:
Fund/ Project Managers: Rima McDonald & Mariani Ismail
Hospital Liaison: Siti J. Ahmad-Rudebaugh
Media Relations: Manja (fb nick: Mad Closet Collections)
Marketing Executive: Elmiza (fb nick: Nurul Eriana Elmiza)
Event Coordinator: Saharuddin Abd Jalil (from Lovehunters)
Tele-amal Operators:
Emil Rajab - Bios Life Franchise Owner (Singapore)
Seedah - creative director/owner of Izzy's Craftz
Mdm Twister - entertainer/balloon sculptor for parties
Erin Zulkifli - makeup artist from Make-up Syndicate
Watie Misty - makeup artist from Watie Misty INC
Aidah - owner of Hijab Matters
We are looking for volunteers to help Saha manage upcoming public concert for Little Nur. Please PM Rima McDonald if you're interested to join our Event Management team under Saha's direction.
Saha, drummer of Lovehunters, is coordinating the charity concert for us featuring top notch local artists and bands. I'm sure he needs more helping hand. Yes, we got permit underway and to be collected in the next few days :D
This is what we can think of right now, as we need more help, we'll post it here.
Meantime, any suggestions/ comments is very much encouraged in here. We are hoping to receive support from philanthropic bodies around the world, so let's try to post information about this effort in English so that they too can know what's going on with Little Nur and how to help.
Thanks for taking the time to read this and probably thinking about how to help. We're running out of time, so we don't have time to plan fundraising events/ projects... but just a donation drive like this.
We look forward to have your support, everyone.
Yours,
Rima McDonald |
