Fundraiser for baby Jacob

[Updated on 26 October] Jacob received his treatment on 15 October 2020 and is recovering well at home. Everything went smoothly and Sarah, Edwin and Jacob would like to thank each and every one of you for helping to make this possible. This fundraising site will remain open for a further few weeks in case of additional contributions.

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Updated on 5 October 2020

Sarah and Edwin would like to thank everyone who has so generously contributed to the fundraising for Jacob’s treatment.If all goes to plan, Jacob will receive treatment on 15 October 2020 in Singapore.However, the fundraising will continueand all donations are welcome and very gratefully received as they will be used to cover the treatment costs.

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A month ago, Sarah and Edwin received the devastating and shocking news that their son Jacob has Spinal Muscular Atrophy type 2, a rare genetic neuromuscular disorder that affects the nerve cells. Jacob is 15 months old and a happy, smiley little boy (see photo below) who loves to eat cheese and play with his crayons. Sadly, Jacob’s body lacks the gene required to produce the SMN protein which is vital for survival. If nothing is done, he will grow progressively weaker until he eventually loses all muscle function and is unable to swallow, talk, move and potentially breathe.

Zolgensma (manufactured by Novartis) received FDA approval last year and is a one-time genetic replacement therapy that has to be done before the child is 2 years old. This treatment introduces the missing gene to Jacob’s body, with the hope that his cells will then be able to start producing the SMN protein by themselves. The cost of the dose in Singapore is USD 2.1 million/SGD 3 million (and the total cost will rise to about SGD3.3 million after taxes and other fees). As a one-time treatment, it will hopefully provide Jacob with the ability to survive with minimal deterioration. As parents, Sarah and Edwin want the very best for Jacob and the chance for him to lead a “normal” life, however the astronomical cost of Zolgensma is posing a huge challenge.

Please help us to raise the money for Jacob’s treatment.

Every cent you donate will take us a step further to reaching this target. In these troubling and uncertain times, Covid-19 has shown us the importance of family and friends and building a strong community around us to support us when things are tough. We are now asking for your support so Jacob can receive the treatment he needs before it is too late. We are aiming to hit a fundraising target of SG$3.3 million by 30 September 2020 which will be a huge challenge but time is critical for Jacob’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 Sarah and Edwin please contact us.

Thank you so much for all your help and support.

Jacob, Sarah and Edwin