I was late to the campaign. By the time it appeared in my newsfeed, the campaign had already achieved its target. 10 days was all it took to raise almost $2.9 million. More than 29,000 people came together and from their kindness and generosity, they gave hope to Devdan and his family.
According to Ray of Hope, Devdan is born with Type 2 Spinal Muscular Atrophy (SMA) – a rare condition that damages nerve cells in the brain and spinal cord. This leads to progressive muscular weakness and trouble with activities such as breathing, speaking, swallowing, and walking.
Zolgensma, approved by the FDA in 2019, is a One-time-only gene therapy treatment for children aged under two years with SMA. It is designed to target the genetic root cause of SMA by replacing the function of the missing or nonworking survival motor neuron 1 (SMN1) gene. This will in turn, stop the progression of SMA and sustain the remaining muscle function needed for children to survive.
The cost of the treatment is astronomical at USD 2.125 million/SGD 2.868 million. Devdan’s parents approached Ray of Hope for help. They are deeply grateful for the success of the campaign. What started as a very fearful and lonely journey has grown into one of gratitude, love and hope, they said.
In a letter of gratitude posted on the Ray of Hope website, they said:
We could never imagine how many people will come forward to help. From family and friends, to their family and friends, businesses, communities, strangers, people that we will never get a chance to meet and thank in person. We are completely blown away by the level of support, love and generosity that poured in.
Thank you to everyone who have helped us whether by making a contribution, spreading the word, sending us words of encouragement or keeping us in your thoughts and prayers. We are deeply grateful. You have given Devdan a second chance at life. A chance to walk and play with other children outdoors, to experience the world not bounded to a wheelchair or breathing aids. Thank you for giving Devdan a chance in life to find his strength and independence.
With your generous contributions received, we are excited to start working with the doctors and experts to move forward with the treatment for Devdan.
When he is older, we will show him the messages that were written to him and tell him how each of you have came together and helped make his life possible.
You have made it possible to cross this a big milestone. Thank you for being a part of Devdan’s journey.
The kindness and compassion demonstrated by the community, indeed the many other acts of kindness and compassion that we have seen in this pandemic bring warmth and cheer to our hearts. Like Asanul Fariq and Norhasyimah who spent their own money to set up a kindness corner outside their flat to give away groceries to anyone who needs them.
It’s their way of giving back. “We’re not rich, but have enough. We’ve been through tough times and know how bad it can get when the chips are down.”
There are many Asanul Fariqs and Norhasyimahs out there. This amazing spirit of giving in the community is more than a ray of hope not just for Devdan or the needy, it is a bright shining light for Singapore. It tells us that when the chips are down, when we hit a rough patch, the community will rise to the occasion and help each other in need.
Ray of Hope is a registered charity and a member of the National Council of Social Services.