My newborn son (born in October 2020) A week after he was born baby Marcell has been diagnosed with SMA (Spinal Muscular Atrophy) at the age of 1 weeks old. spinal muscular atrophy, Is a rare disease and leading genetic cause of infant mortality.
here is a brief description (Wikipedia):
Spinal muscular atrophy (SMA) is a rare neuromuscular disorder that results in the loss of motor neurons and progressive muscle wasting.
It is usually diagnosed in infancy or early childhood and if left untreated, it is the most common genetic cause of infant death. It may also appear
later in life and then have a milder course of the disease. The most common symptom is progressive weakness of voluntary muscles, with arm, leg and
respiratory muscles being affected first. Associated problems may include poor head control, difficulties swallowing, scoliosis, and joint contracture.
Please allow me to be blunt. If baby Marcel is not treated successfully within the next four or five months, it will likely be his death sentence,
and even if he does not die right away, he will experience only a very short life of unspeakable pain, misery and disability.
If he receives treatment early enough, before the SMA damages the muscles, he still might be able to have a chance to live a normal life.
There’s no cure in Canada, but there is another drug called Zolgensma (Gene therapy) that’s described as not just life-saving, but life-changing miracle and only available in the US (see update below).
There’s just two problems. The drug is not approved yet in Canada (see update below). It’s also known as one of the priciest drugs in the world — the one-time treatment in the U.S. will cost about approx $2.9 million and more (other expenses such as hospital fee, other drug or medicine and etc makes the total fee closer to $3.9 million). And we cannot affords it and there is no way we can cure our son without your prayers, support and help.
Reference: link to SMA cure Medicine Zolgensma from Global News:
Reference: Testimonial SMA treatment with Gene therapy ZOLGENSMA from hospital in U.S.A (https://youtu.be/C5Dl3iMvflU):
Testimonial of Solgensma Treatment
He is now 10 weeks old, and baby Marcell deserves to have a normal life like any other kids when he grows up. Please help Share this link to help baby Marcell.
Update regarding Zolgensma approval in Canada (December 16, 2020):
Circumstances changed dramatically last Wednesday when Novartis Pharmaceuticals Canada Inc. announced Health Canada had approved Zolgensma.
“Of course, it’s good news but it still is very new for people and, at this point, there are a lot questions,”
“Will it be 100 per cent covered by OHIP or partially covered? No one seems to know at this point.
According Ministry Of Health Ontario, the status is still unknown, so is it approved or not approved?
“I was speaking to people at Sick Kids in Toronto but, because it’s so new, no one really knows for sure what’s going to happen next or when.”
Update From Ministry of Health Canada along with pCPA, HTA and CADTH and Novartis Canada:
The Ministry and pCPA has requested that Novartis provide additional compassionate coverage for those patients unable to access the drug until these processes are complete - after spoken to Novartis, Novartis has DECLINED to give Marcellinus an additional compassionate coverage due to an ongoing negotiations between Health Canada, pCPA, HTA, CADTH and Novartis the pharmaceutical drug company for Zolgensma.
Proof for news above from Brantford Expositor News: https://www.brantfordexpositor.ca/news/local-news/health-canada-approval-of-new-drug-gives-brantford-family-hope
The Hamilton Spectator: https://www.thespec.com/news/hamilton-region/opinion/2021/01/13/a-brantford-fathers-plea-for-his-babys-life-is-racked-by-uncertainty.html
Toronto CTV News:
January 13, 2021: https://toronto.ctvnews.ca/video?clipId=2118117&binId=1.3378530&playlistPageNum=1
January 14, 2021: https://toronto.ctvnews.ca/ontario-family-looks-to-raise-3-million-to-buy-drug-for-baby-with-rare-illness-1.5267545
The Star News (Toronto Star): https://www.thestar.com/ths/news/hamilton-region/opinion/2021/01/13/a-brantford-fathers-plea-for-his-babys-life-is-racked-by-uncertainty.html
For your convenience, donations can be send via Paypal, E-transfer (For E-transfer or Paypal email: https://babymarcell.com/donate ) or Gofundme (Gofundme charge us 2.9% + $0.30/ transactions or donations).
Our Family's thank you all for your Prayers, Help, Share and support to my son, may God blessed you all.
IMPORTANT: This is our official campaign page and Daniel Muljarahardja/ Marcellinus Kornelius Muljarahardja (main organizer) along with co-organizer/ Team: Aloysius Handojo, Saraswati Djojorahardjo and Sam Sanders is the only official organizer’s team for this campaign so please ignore other fake pages – please report any face campaign to Daniel Muljarahardja or other organizer’s team member. Thank you in advance.
And below is the only Marcellinus Kornelius official’s social media account:
Help us with Advocacy:
Help Baby Marcell:
Fundraising team: Marcellinus Fundraising Team (4)
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