Thursday, January 20, 2022

'It's a miracle': Boy treated with $3m drug donated by public can now walk with support

Source Website: https://tnp.straitstimes.com/news/singapore/its-miracle-boy-treated-3m-drug-donated-public-can-now-walk-support
By Theresa Tan and Nadine Chua, The New Paper, 19 January 2022 at 05:05 pm


Devdan Devaraj was diagnosed with spinal muscular atrophy. Now, he can walk and even ride a tricycle with some assistance.
PHOTO: Devdan Devaraj was diagnosed with spinal muscular atrophy. Now, he can walk and even ride a tricycle with some assistance.
PHOTOS: SHU WEN DEVARAJ, LOVE_DEVDAN/INSTAGRAM
Picture posted by Theresa Tan and Nadine Chua, The New Paper on 19 January 2022 at 05:05 pm
https://blogger.googleusercontent.com/img/a/AVvXsEj1_EzxLUDtp_okz104XEnuopcQEOmHlbWWF7Na3nOLE77hu-RWhtVgRS_iILFNYKmSWvb6Tg5-BAKb9gOwHIXo6yi2RRUEkee-twpV8vWo1QTTWqYwt4jffgZp4jiKHo2XDrgl4H40tZeRtsN1xCteVqBF-tulhCF3n85KeWY_2MJG24cdJOuG8OjU=s780
https://tnp.straitstimes.com/sites/default/files/styles/rl780/public/yq-c1-19012022.jpg?itok=Voa0ib8D
https://tnp.straitstimes.com/news/singapore/its-miracle-boy-treated-3m-drug-donated-public-can-now-walk-support


Two-year-old Devdan Devaraj, who has a neuromuscular disease, can now stand and walk with support, thanks to the almost ＄3 million donated by the public which allowed him to be treated with the "world's most expensive drug".

"A year ago, my husband and I couldn't even picture him walking. At that point, even standing was an issue. So to see him walk now and even ride a tricycle with some assistance is such a miracle to us," his mother, Mrs Shu Wen Devaraj, told The Straits Times.

In just 10 days in August last year, about 30,000 people donated a total of ＄2.87 million through crowdfunding charity Ray of Hope for Devdan's treatment.


Two-year-old Devdan Devaraj, who has a neuromuscular disease, can now stand and walk with support
PHOTO: Two-year-old Devdan Devaraj, who has a neuromuscular disease, can now stand and walk with support, thanks to the almost ＄3 million donated by the public which allowed him to be treated with the "world's most expensive drug".
Picture posted by Devdan@love_devdan on 15 January 2022
https://blogger.googleusercontent.com/img/a/AVvXsEiDecQbnVAt2RrsL2_i3ZlVeAKxOqSRL42gQa0w6z4e4wTCPt-7RFWVh_6J8UYYg9kUWhUlqXTcMsAbBn74lXeFHxLWrTgpSPu4Fkp7jOErxppf1xTP7YKfaS4UsIM6eW7iFedfQG5ebBtqCk5I0L4EB_yzNanxrA7kI2eyu0sHpvG4oQvN3N28rhiH=s1334
https://instagram.fsin9-2.fna.fbcdn.net/v/t51.2885-15/e35/271956131_1096399137819441_9088967118999175160_n.webp.jpg?_nc_ht=instagram.fsin9-2.fna.fbcdn.net&_nc_cat=109&_nc_ohc=fmUk_AGf9AAAX_qM8gx&edm=AABBvjUBAAAA&ccb=7-4&oh=00_AT8-_BYvXVcpyLjqwtY9g5Sz5LS2Pj-9tZ25Cm5aIcFF7g&oe=61F03806&_nc_sid=83d603
https://www.instagram.com/p/CYv_MwhPSpT/


Ray of Hope's general manager, Mr Tan En, said the sum is the largest raised for a single beneficiary on its platform.

The amount was almost two-thirds of the ＄4.4 million Ray of Hope collected from 214 fund-raisers on its site last year. Mr Tan said that on average, a fund-raiser on the platform usually collects between ＄2,000 and ＄3,000.


Ray of Hope's general manager, Mr Tan En, said the sum is the largest raised for a single beneficiary on its platform.
PHOTO: Ray of Hope's general manager, Mr Tan En, said the sum is the largest raised for a single beneficiary on its platform.
Picture posted by Devdan@love_devdan on 25 December 2021
https://blogger.googleusercontent.com/img/a/AVvXsEggbrLUltWG-30xkJBXvlw7i1qRhkH9B2iVGapP0dAUeMDMb69PCeriSelupYJYZia3GodsJNWJ2urZk3bvOFuNo3CDZDUE03kAYQYsia-CXrX3JAVepegaY13DORm7QN4635b1aX1dR5R8Qe7P75Rk1MlyzHEmAyfZMCvxl2NvQ-_E5fV2LpPlur5v=s1350
https://instagram.fsin9-1.fna.fbcdn.net/v/t51.2885-15/e35/p1080x1080/269909291_498715414815209_5050248386816923825_n.jpg?_nc_ht=instagram.fsin9-1.fna.fbcdn.net&_nc_cat=105&_nc_ohc=kBUPiI9_hg0AX_ZgZft&edm=AABBvjUBAAAA&ccb=7-4&oh=00_AT-hGiCBrqvz8ybhJFsdVoN7yadh_TH0SAcOMAPhnXc3bw&oe=61F1791B&_nc_sid=83d603
https://www.instagram.com/p/CX5yr1nPMek/


He said of the campaign for Devdan: "To my knowledge, I believe it's among the largest for a single fund-raiser in Singapore."

Devdan is the only child of civil servant Dave Deveraj and his interior designer wife. The couple are both 33 years old.


Devdan is the only child of civil servant Dave Deveraj and his interior designer wife. The couple are both 33 years old.
PHOTO: Devdan is the only child of civil servant Dave Deveraj and his interior designer wife. The couple are both 33 years old.
Picture posted by Devdan@love_devdan on 08 January 2022
https://blogger.googleusercontent.com/img/a/AVvXsEieK3UlaW3mbAXCy-3cUleEW6WSPgxBvDBXyGTO79e99J6D4rdoUMK7j7FvSGQxrgoznsmFQmQzwAuS1iiefXS3oLkOBeROJ9fxmxeOvHPigsoSEcoNzPqomPt_EWyb6u1PuKwDcFUuBdALjUBgRZrXCbsNwterJfoxKMTq4enM7pRiUERq5GyF82ze=s1350
https://scontent-waw1-1.cdninstagram.com/v/t51.2885-15/sh0.08/e35/p640x640/271511115_634276137843699_2676081638516947572_n.jpg?_nc_ht=scontent-waw1-1.cdninstagram.com&_nc_cat=103&_nc_ohc=SBo_KY5n_tcAX_Ofg12&edm=AP_V10EBAAAA&ccb=7-4&oh=00_AT_NK0CgN8HQ8u-eZvmBtQ_ZK_JmmA_Upx_A0OgU6vpSnw&oe=61F04BEC&_nc_sid=4f375e
https://www.instagram.com/p/CYdc2aVL3ay/



When he was one month old, the Singaporean boy was diagnosed with spinal muscular atrophy, which leads to muscle weakness that worsens over time. If left untreated, he could face total immobility in his teens, among a host of other problems.

In September last year, Devdan was treated with Zolgensma, a one-time gene therapy treatment for children with spinal muscular atrophy, at the National University Hospital.


In September last year, Devdan was treated with Zolgensma, a one-time gene therapy treatment for children with spinal muscular atrophy, at the National University Hospital.
PHOTO: In September last year, Devdan was treated with Zolgensma, a one-time gene therapy treatment for children with spinal muscular atrophy, at the National University Hospital.
Picture posted by Erin Vogt on 03 August 2021 - for illustration only
https://blogger.googleusercontent.com/img/a/AVvXsEhcxO5igt1DGByhg-VPfknCQiHWYeJJduLoeXM1FzCIvtgSIRIiX6k5SFNDnTQCHYibZev2C-qNxt6DUG-r9LMTRvQp8Jr9Rc65giuuygQNegM1IEY4o3BrYMo5dbLPgyESJSOM-i-f_a4nxZzD-vSLXWUnEE5VVlmaFfi9_rrEXv57rPYlJPWttVJx=s1600
https://townsquare.media/site/385/files/2021/08/attachment-von-thun-farms-4.jpg
https://wobm.com/beautiful-sunflower-fields-you-can-stroll-through-in-nj-2021/


It is touted as the most expensive drug in the world and costs around ＄2.9 million.

Mrs Devaraj said: "We cannot thank the public enough for their donations and we will always be grateful to them. I hope they know that their kindness has changed Devdan's entire life."



Posted by love_devdan on 31 Secember 2021
https://www.instagram.com/p/CYJuNaGMml0/


Mrs Devaraj said: 'We cannot thank the public enough for their donations and we will always be grateful to them. I hope they know that their kindness has changed Devdan's entire life.'
By Theresa Tan and Nadine Chua, The New Paper, 19 January 2022 at 05:05 pm
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NUH team set to treat Singapore baby with world's costliest drug, posted on Friday, 20 August 2021
NUH team set to treat Singapore baby with world's costliest drug, posted on Friday, 20 August 2021
https://veryfatoldman.blogspot.com/2021/08/nuh-team-set-to-treat-singapore-baby.html
Reference
[1] Theresa Tan and Nadine Chua, The New Paper, 'It's a miracle': Boy treated with $3m drug donated by public can now walk with support, posted on 19 January 2022 at 05:05 pm, https://tnp.straitstimes.com/news/singapore/its-miracle-boy-treated-3m-drug-donated-public-can-now-walk-support


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