In Behasa, the native language of Indonesia, there is no word for Rubella. In one of the most populated countries in the world, a disease that had over 2,800 confirmed cases in 2017 year and is easily preventable goes widely unknown.
Grace Melia’s daughter Aubrey was born with Congenital Rubella Syndrome (CRS) after Grace contracted Rubella while pregnant. When she became pregnant in 2011, Grace had not been vaccinated against or screened for Rubella; in fact, she had never even heard of it. Typical of CRS Aubrey was born with a number of birth defects which will require lifelong medical care.
Experiencing feelings of frustration and isolation with her situation Grace did something out of the ordinary for the relatively conservative culture of Indonesia. She created a blog (www.gracemelia.com) and in it she spoke openly about her experiences with Aubrey and her CRS. She shared stories and pictures of her daughter, writing about their everyday challenges, showing Aubrey both laughing and crying, happy and sad, struggling to move and triumphantly standing. Through the blog she began to hear from other parents of children with CRS and a network began to grow.
In 2013, Grace founded Rumah Ramah Rubella (Friendly Home Rubella), an online community where families affected by CRS can share their stories, give advice, and provide mutual support. Now over 21,000 members strong, the community serves as a safe space where families can reach out to others to discuss treatments, workshops, and other resources to help raise their special needs children. As the founder of the community Grace spends much of her days responding to messages online from other parents, providing the kind of information and support she wish she had when she was in their place.
When not providing support to families affected by CRS, Grace works tirelessly to prevent other children from contracting the disease. She shares her story through advocacy videos and speaking engagements urging women to have themselves and their children vaccinated against Rubella. Most recently, she has joined the Indonesian Ministry of Health, Red Cross, and UNICEF to promote the national measles and rubella vaccine campaign.
Beginning in August 2017 and concluding in October 2018, over 70 million children between the ages of 9 months and 14 years are being targeted to receive the MR vaccine. This campaign marks the introduction of Rubella containing vaccine to the country and its inclusion as part of the routine immunization schedule. Through this campaign and strong routine immunization coverage the transmission of the disease can be interrupted and mothers-to-be and their unborn children can be protected from the devastating effects of CRS.
At the campaign’s national launch ceremony alongside Indonesian President, Joko Widodo, Grace took to the stage and shared Aubrey’s story with the country. She has experienced firsthand the challenge of raising a child with CRS and she has this advice for parents who find themselves in a similar situation., “take your time to grieve. Just cry. Cry out loud. It can give us the relief we need. You don’t have to be strong all the time, raising a child with CRS isn’t easy. But when you are done crying then get back up. Always stand up again after you cry because your kids need you.”