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#Post#: 2200--------------------------------------------------
Crowdfunding efforts to save Baby Shamel.
By: Syzthesis Date: March 5, 2023, 11:06 am
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Cr. -
HTML https://rayofhope.sg/campaign/baby-shamel/
We are saddened and heartbroken to share that our 15 month baby
Shamel is diagnosed with the number 1 gene killer - Spinal
Muscular Atrophy (Type2). SMA is a rare neuromuscular condition
that causes muscles to become weak and damages the nerve cells
in the brain and spinal cord. It leads to progressive muscular
weakness and affects the ability to independently sit, crawl,
stand, walk, swallow and even breathe. Without medication,
further deterioration and eventual death of his motor neurons
will lead him to total immobility and weakness.
The genetic specialist revealed that there’s no cure for this
condition. However, the recommended treatment would be to go for
one-time gene therapy with a drug named ‘zolgensma’ from
Novartis. But to our surprise it is the world’s most expensive
gene therapy which would cost 2.2 million USD (3 million SGD).
Thankfully, with the tremendous support from RAY OF HOPE, The
crowdfunding charity organization, we managed to open a platform
where our loved ones can join hands to support this treatment
for Shamel.
Not a single dollar that is donated will come into our personal
accounts. With the help of Ray of Hope, the funds will be
directly transferred to the National University Hospital (NUH)
who will help us secure this medication when the funds are
collected.
I humbly seek your support to circulate this link as much as
possible and to support in any way you can. Specially from my
present and past colleagues from Pfizer, MillenniumIT ESP ,
Merck ,MSD, Toastmasters International, Cisco ,SLIIT , Coventry
University , Anglia Ruskin University.
Every penny matters and will take Shamel one step closer to
receiving Zolgensma.
Donation link -
HTML https://lnkd.in/gGd4a3ti
Follow us on -
HTML https://lnkd.in/gv265BnW
Facebook Page -
HTML https://lnkd.in/gxUhRUB8
Love
Shamel, Dula & Achintha
#genetherapy #help #crowdfunding #support #hopeforshamel #love
#share
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#Post#: 2201--------------------------------------------------
Re: Crowdfunding efforts to save Baby Shamel.
By: Syzthesis Date: March 5, 2023, 11:10 am
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**Note: All donations are self-voluntary based, and TAF do not
have any affiliations with the donee or have any endorsements
involvement for this donation cause.
However, a big Thank you for your selfless donation and
intention if you have donated to the cause of helping baby
Shamel, or helped in a way or another.
#Post#: 2202--------------------------------------------------
Re: Crowdfunding efforts to save Baby Shamel.
By: Syzthesis Date: March 5, 2023, 11:16 am
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This is solely a sole intention of goodwill from myself
(syzthesis) to any members who have donated more than $100 to
help baby Shamel. Please contact me separately by directly dm
myself within the forum, I will arrange for one amulet to be
given to you, one time basis per donor. Rules of engagement
applies herein;
1. Do not ask for a certain model of amulet, it is at my own
discretion what amulet to give to you as a goodwill basis.
2. Do not ask me what details of the amulet, or to provide
authenticity of the amulet.
3. Please respect the intention of the amulet giving, as it is
to thank you for being selfless, it is not a value-for-value
trade.
Thank you - Syzthesis.
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