It’s been four years since Julie Anna Orillo lost her nine-year-old daughter to anti-NMDA receptor encephalitis but there was never a day that she didn’t miss her.
“There were days that I feel really sad and wonder what life would have been if she’s still alive. I never became whole again when she died. It’s like there’s always something missing. There’s never a thing or person that can make me happy,” Julie admitted.
Julie has been working as a government employee for a year now. Apart from her work, she goes biking during weekends with her friends to keep herself busy and as a form of exercise and leisure as well. She also sings in a choir every Sunday. (Read: This Pinay Catechist Has Been Serving the Church for 40 Years Now)
“I need to keep myself busy or else, I’ll be thinking about my daughter all the time,” she admits.
Losing a daughter to illness
Julie lost nine-year-old Rianna Jewelle on August 12, 2017 due to anti-NMDA receptor encephalitis. It is an autoimmune disorder in which antibodies attack the NMDA glutamate receptors. Towards the end of her life, Rianna also got ovarian teratoma, a dermoid cyst of the ovary that mainly affects young people with around 30 percent of cases under 18 years old.
“These receptors are proteins that control electrical impulses in the brain. Their functions are critical for memory and cognitive processing, problem-solving, planning, personality and range of emotions,” explained by Dr. Ronald Ramos, Rianna’s attending neurologist who co-managed her case with a pediatric neurologist, gynecologist, and intensivist.
Rianna was hospitalized for 10 months and was bedridden at home for 11 months before she passed away. Her hospitalization costed her family a whopping P13 million hospital bill, which they were able to pay through charitable institutions such as Philippine Charity Sweepstakes Office, Department of Social Welfare and Development, among many others. Two concerts for a cause and a Zumba for a cause were also organized by some close friends to help pay the hospital bills. (Read: The journey of a miracle 26-weeker from the Philippines)
When Rianna was discharged from the hospital, her family continued caring for her at home for less than a year that cost them another P30,000 monthly to buy her supplies, medicines, doctors’ checkup, and therapies.
Life without Rianna
While it was financially and emotionally draining to take care of a very sick patient, Julie and her family, especially her parents who shouldered almost all the finances, stresses, and responsibilities at that time because she was jobless, never regretted it.
Not once she heard her parents complained about it.
“It’s hard, but at least we gave our all. No regrets. Even while we were struggling, I can honestly say that God really provided for our all needs during those difficult times. When we felt so low, I really felt His presence, his help through people. God assured us that He’s just there and will never leave us,” Julie said.
It’s hard to lose someone we love, more so if it’s your own child; so Julie was hesitant to give some advice to parents who were having difficulty coping with grief or loss like her. (Read: Meet the Pinay Who Never Lets ‘SLE’ Get in Her Way of Living)
“It’s difficult to offer some advice. But even though it’s difficult and you don’t know where to begin, you must go on with your lives. Make yourselves busy, find an activity that interests you, join a church organization, or look for a job. I still have another child (Rianna’s younger brother) so I need to be strong for him because I know he still needs me,” she says.