Update from Ray of Hope (26 Sep 21)
Dear Donors,
We have some good news to share. Devdan has completed his Zolgensma treatment on the 25th Sep. His health will be closely monitored for the next 3 months. He is receiving an oral corticosteroid and will undergo regular blood tests to monitor his liver function.
Here’s an update from Devdan’s family
“We are eternally grateful to all donors and people who contributed in any way to his journey and last but not least the NUH team and Doctors who worked very hard to make this possible.”
Thank you again for your generosity and giving Devdan a second chance at life!
Ray of Hope Team
Update from Ray of Hope (18th Aug 21)
Dear Donors,
Funds have been transferred!
We have successfully transferred the funds to NUH. The hospital is working hard to bring Zolgensma in for Devdan’s treatment.
The total amount transferred was $2,868,750. This is $750 higher than the campaign target due to the exchange rate difference when we calculate the SGD amount when we started the campaign.
As per the campaign story, this amount is used to pay for Zolgensma, and does not cover items such as medication, follow up therapy sessions or other hospital related fees.
The estimated timeline for Devdan’s treatment should be Mid September, as it takes around 1 month to bring the drug to Singapore. We will give donors another update when Devdan starts his treatment.
Excess donations from campaign
Ray of Hope wants to meet the needs of our beneficiaries while ensuring that we are accountable to donors by not raising more than what is needed for each campaign.
Therefore, donors who gave after the campaign is fully raised will have the option of asking for a refund.
These are donations made via Paynow from the 13 August onwards, and donors who gave cheques that arrived in our office after the 13th Aug.
For Paynow Donations
Please email admin@rayofhope.sg by 5pm 24th Aug with a screenshot of your PayNow donation clearly stating the date of your donation, your name and the amount so we can process your refund in 5 to 10 working days.
For Cheque Donations
We will be contacting you if you left your details at the back of the cheque. For those without contact details, we will proceed to cancel the cheque.
We will work with Devdan’s family to channel any amount left to other campaigns on Ray of Hope. 100% of the donations will be given to the campaigns.
Thank you again for your generosity and giving hope to Devdan.
Ray of Hope Team
18 August, Wednesday
Campaign update as at 13 August, 4:30pm
DEEPLY GRATEFUL.
Today is a pivotal moment for our family.
What started as a very fearful and lonely journey has grown into one of gratitude, love and hope.
$2.9 million is an astronomical figure to us, an amount that Dave and I thought impossible to have access to from the day we were told that this is what it takes to give Devdan a chance at life. We silently carried the feeling of helplessness for over one and a half years, wishing that time would slow down while bracing ourselves for the regression that will only get worse.
With the encouragement and strong support of my best friend, Julie, clients turned friends Aaron Wan, Ryan Tan, and our family at home and at work (R&R), we decided to step out into the open and try raising funds publicly. While fearful of the outcome, we as parents know that this is our last chance to do something for Devdan.
We could never imagine how many people will come forward to help. From family and friends, to their family and friends, businesses, communities, strangers, people that we will never get a chance to meet and thank in person. We are completely blown away by the level of support, love and generosity that poured in.
Thank you to everyone who have helped us whether by making a contribution, spreading the word, sending us words of encouragement or keeping us in your thoughts and prayers. We are deeply grateful. You have given Devdan a second chance at life. A chance to walk and play with other children outdoors, to experience the world not bounded to a wheelchair or breathing aids. Thank you for giving Devdan a chance in life to find his strength and independence.
With your generous contributions received, we are excited to start working with the doctors and experts to move forward with the treatment for Devdan.
When he is older, we will show him the messages that were written to him and tell him how each of you have came together and helped make his life possible.
You have made it possible to cross this a big milestone. Thank you for being a part of Devdan’sjourney.
Yours sincerely,
Dave, Shuwen and Devdan
—
30,000 people gave hope to Devdan
When Devdan’s family approached us, we assured them that we are in this together. Ray of Hope will handle the campaign and finances so they can focus on taking care of Devdan.
It’s been amazing to see how the Singapore community rallied to give hope to Devdan and his family. More than 29,000 people came together to raise $2.86 million dollars in 10 days.
We are very grateful to be the trusted platform and charity to enable this connection between the donors and the family.
What happens next?
We are working with the NUH Finance team to make the necessary payments. Donors will be updated once the funds have been transferred.
Ray of Hope Team
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Devdan is born with Type 2 Spinal Muscular Atrophy (SMA) – a rare condition that damages nerve cells in the brain and spinal cord. This leads to progressive muscular weakness and trouble with activities such as breathing, speaking, swallowing, and walking.
Devdan, turning two in October this year, is a happy and easy-going child. He is imaginative, has a great attention span and can play independently on his own.
Zolgensma, approved by the FDA in 2019, is a One-time-only gene therapy treatment for children aged under two years with SMA. It is designed to target the genetic root cause of SMA by replacing the function of the missing or nonworking survival motor neuron 1 (SMN1) gene. This will in turn, stop the progression of SMA and sustain the remaining muscle function needed for children to survive.
The cost of the treatment in Singapore is USD 2.125 million/SGD 2.868 million. (depending on the current exchange rate). We are working with Ray of Hope, a crowdfunding charity to handle all the payments so you can be sure that the funds are going directly for his treatment. Ray of Hope does not take a cut from the donations, and 100% of the your donations will go to his treatment. Payment will be made directly to the hospital. The hospital requires one month to process the paperwork and to bring the drug over.
As a one-time treatment, it will help Devdan improve muscle strength and increase survival with minimal deterioration.
As parents, we want the very best for Devdan and for him to lead a life as “normal” as possible. However, the staggering cost of Zolgensma is posing a huge challenge.
If he misses this chance, the other 2 options are daily oral medication and intrathecal injection every 4 months for the rest of his life.
It is anticipated that the use of Zolgensma is likely to be more cost effective in the long run.
We humbly ask you to help us to raise the money for Devdan’s treatment.
Every dollar you donate will take us a step closer to reaching this target. We are now asking for your support so that Devdan can receive the treatment he needs before he turns two. We hope to achieve the fundraising target of SG$2.868 million by 1st September 2021. We know that this is a very difficult target but time is of essence for Devdan’s treatment.
We would be very grateful if you could pass on this fundraising link to your family and friends who might like to contribute. If you have any links to community groups, potential sponsors or others who might be able to support us, kindly reach out to us by email at lovedevdan@gmail.com.
Thank you so much for all your help and support.
Dave, Shuwen and Devdan
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Donate to this campaign *Updated 13 Aug 8am*
You can donate via:
1. Credit Card through the donation portal on Ray of Hope’s website;
*We have remove the option to donate via PayNow & Cheques, for more information please see the FAQ section on Donation Methods. If you have donated via Paynow, rest assured that the amount will be reflected in the total amount raised.*
For any enquiries, please drop Ray of Hope a note at info@rayofhope.sg. Thank you.
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(Updated) FAQ for this campaign:
How will the funds to the campaign be used and where are the funds going?
The donations made through the campaign page go directly to Ray of Hope’s bank account. Ray of Hope will handle the donations received and pay the hospital directly for the cost of treatment. The donations will not go into our personal accounts.
What happens if we are unable to raise sufficient funds for Devdan’s treatment?
In the unfortunate case that we are unable to raise sufficient funds for Devdan’s treatment, we will work with Ray of Hope to allocate the donations received to support other ongoing campaigns on Ray of Hope’s website. Donors will also get a choice to request for a refund on their donation. The refund request will have to be made by a stipulated date after the closure of the campaign.
For credit card donations made directly via Ray of Hope’s website, the refund request can be processed upon request. Do take note that the refund amount will be a net off any transaction fees that has been incurred by our payment platform. To request for a refund, please drop us an email at admin@rayofhope.sg, together with the automated email receipt that you should have received upon your donation to the campaign.
For donations made directly to Ray of Hope via cheques, Paynow, PayLah! or bank transfers, please email admin@rayofhope.sg with your refund request and Ray of Hope will follow up with you separately.
Donation Methods & Excess Funds (updated 11 Aug, 9pm)
Thank you for the amazing support so far. More than 30,000 donors have stepped up to give Devdan hope. As we are close to fulfilling the campaign target, we will prefer donations to come in via credit card, instead of Paynow & cheques. If you have donated via Paynow, rest assured that the amount will be reflected in the total amount raised.
Ray of Hope wants to meet the needs of the beneficiaries while ensuring that they are accountable to donors by not raising more than what is needed for each campaign. Therefore in the event where donations come in after the campaign is fully raised, it is their policy to allow donors to contact them for refunds by a stipulated date. If there are any donations above the campaign target, we will work with Ray of Hope to allocate those donations to support other ongoing campaigns on their website.
By the nature of Paynow donations, Ray of Hope is only provided with your name and the amount donated and not your contact details. Given the volume of donors, it will take Ray of Hope longer than usual to refund your donation. Donors who request for refunds will need to email admin@rayofhope.sg with your donation details for them to check against the database of more than 24,000 donors for this campaign.
About Ray of Hope
100% of your donations through Ray of Hope goes to people in need. We do not take a cut from the funds. We even cover the 3rd party credit card charges, if you choose not to, that other crowdfunding platforms deduct from your donation for campaigns. 100% of all campaigns are also fully verified, so you know your funds goes to real people with real needs. We take donor accountability very seriously – with yearly audited accounts and strong governance in place to ensure that your donations is properly channelled to the beneficiaries.
Ray of Hope is a registered charity and a member of the National Council of Social Services.
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