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Sherry Soon: Giving Hope To Critically Sick Kids While Battling Vasculitis

For the wish granter at Make-A-Wish Singapore, fulfilling kids’ dreams required some “time travel”.

Sherry Soon: Giving Hope To Critically Sick Kids While Battling Vasculitis

For Sherry Soon, effecting positive change is a purpose greater than her struggles with vasculitis.  In addition to fulfilling the dreams of several children at Make-A-Wish Singapore (MAWSG), she also helps support adults with special needs as well as people diagnosed with autoimmune disease through two non-profits she founded.

You’ve been a wish granter at MAWSG since 2013. What keeps you going?

I feel aligned with its cause to give strength and hope to kids with critical illnesses. Among my most memorable experiences was the first wish I granted in 2013. Lydia (not her real name), who loved the 1920s and photography, had requested for a digital camera.

So we took her “back in time” to Raffles Hotel Singapore, where we had afternoon tea as a jazz band played her favourite tunes. We then brought her to The Escape Artist, where she and her family played games inspired by classic murder mysteries set during the era. And after solving the last clue, we presented her with a camera.

Amid having to deal with vasculitis, you established Be Kind SG (2017) and Autoimmune Diseases SG (2013). Why is helping others important to you?

Twenty years ago, I was diagnosed with vasculitis, a disease where the body’s immune system attacks the blood vessels and nerves to cause inflammation in my feet. It hasn’t been easy managing the condition; in addition to the uncertainty and suffering flare-ups, medications such as prednisolone and low-dosage chemotherapy drugs also caused side effects, such as osteoporosis and lowered hormone levels.

But the biggest challenge was helping people around me understand what it’s like for patients with an “invisible” disease like vasculitis. For more than 10 years after I was diagnosed, I didn’t know anyone who had an autoimmune disease and felt very lonely and isolated. So I started Autoimmune Diseases SG — to seek out others with such conditions so we can support one another. (Find out more about volunteering opportunities here.)

The experience I gained from this led me to establish Be Kind SG, which strives to remind people to become kinder and more understanding to one another. Volunteers can choose to join micro-volunteering activities that reach out to adults with special needs or appreciate various communities like healthcare workers or caregivers. (Find out more about volunteering opportunities here.)

How has the Covid-19 pandemic strengthened your endeavours to make a difference in others’ lives?

By the simple fact that it’s worsened the challenging circumstances others are already facing.   For example, some MAWSG wish kids are immuno-compromised so we avoided visiting them during the past few months; instead, we stayed in touch through Zoom calls and sent them anticipation gifts as some wishes were delayed due to Covid-19.

Covid-19 has made giving back challenging while giving us new opportunities to do so. At Be Kind SG, we have converted our in-person volunteering at adult disability homes to virtual volunteering. For instance, we included different performances by a professional clown and ventriloquist, among others. The residents’ main love languages are physical touch and quality time, so not all respond as well to virtual sessions as they cannot hear or see us clearly from a distance. But we will continue to do whatever it takes to stay connected with them.

In April, when we learnt of mothers whose special-needs kids couldn’t adjust to home-based learning due to the circuit breaker, I got donors to sponsor more than 30 cakes and other gifts for these women. I was very touched when one of them shared with me how much she appreciated being described as a “Super Mum” (instead of “bad mum” when her child has a meltdown in public).

Lessons from 2020 that will be important for 2021?

It is important to be flexible to adapt to new circumstances in every aspect of our lives, including volunteering. We haven’t been able to meet our beneficiaries as often as pre-Covid-19 but technology allows us to connect with the communities we serve. I’m excited that we can now gather in larger groups as this also means the wish kids can invite more family members and friends to be together with them the day their wish is granted.      

A version of this story first appeared in the January/February 2021 issue of A Magazine.       

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