Author Topic: Crowdfunding efforts to save Baby Shamel.  (Read 918 times)

Syzthesis

  • Member
  • **
  • Posts: 26
Crowdfunding efforts to save Baby Shamel.
« on: March 06, 2023, 01:06:09 am »
Cr. - 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 - https://lnkd.in/gGd4a3ti

Follow us on - https://lnkd.in/gv265BnW

Facebook Page - https://lnkd.in/gxUhRUB8

Love
Shamel, Dula & Achintha

#genetherapy #help #crowdfunding  #support #hopeforshamel #love #share
====

Syzthesis

  • Member
  • **
  • Posts: 26
Re: Crowdfunding efforts to save Baby Shamel.
« Reply #1 on: March 06, 2023, 01:10:20 am »
**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.

Syzthesis

  • Member
  • **
  • Posts: 26
Re: Crowdfunding efforts to save Baby Shamel.
« Reply #2 on: March 06, 2023, 01:16:27 am »
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.
Like Like x 1 View List