The Size of a Mother's Heart
Glady V. Ramos

Vilma Dee tried to hold back the tears as she handed the medicines for Marielle. Marielle was a bubbly twenty-year-old who had a rare kind of disease that “poisons” the body because it absorbs too much copper. When Vilma fi nished praying for her, Marielle beamed and asked for a kiss. “Fight, okay?” Vilma plants a kiss on her cheek. “And don’t forget to pray to Jesus.” As she takes the 3-hour bus ride from Bulacan back to her home in Las Piñas, Vilma can’t help but think about the exacting toll of this illness. She is not a doctor, but Vilma knows Wilson’s Disease very well. All too well, in fact. It’s the same hereditary disorder that claimed the life of her daughter Vanessa seven years ago. The Face of Wilson’s Disease Vanessa was a happy, healthy kid who loved to sing. Growing up normally, she even graduated from elementary with a Best in Science Award. But in 1999, when she was 14 years old, Vanessa suddenly got sick. Her complexion turned yellow, and she kept vomiting. At a private hospital in Cavite (35 kilometers south of Manila), doctors gave her blood transfusion and concluded that she had viral hepatitis – even if she had tested negative for that disease. For about a year, she was in and out of the hospital, but doctors could not suffi ciently explain her illness. Her motor skills affected, she walked like THE SIZE OF A MOTHER’S HEART a robot and had diffi culty speaking. Sometimes her condition would improve. But one time, she suddenly became violent, kicking and screaming that doctors had to tie her to the bed. She couldn’t recognize people, and her speech was incomprehensible. As her condition deteriorated, she had to stop schooling on her second year in high school. Eventually, with jaundice, abdominal enlargement, and ninety-fi ve percent of her body paralyzed, Vanessa fell into a coma. Fighting for her daughter’s life, Vilma decided to take Vanessa to Manila. But at a well-known public hospital, Vanessa was refused. Running out of options, Vilma prayed, “Lord, now what?” She heard a voice insider her, “Bring her to the nearest hospital.” The nearest hospital was the Medical Center Manila. Vilma hurriedly brought her daughter there and was met by Dr. Leticia Ibañez- Guzman, a specialist in Internal Medicine and Gastroenterology. When Dr. Ibañez-Guzman assessed Vanessa’s condition, she advised, “Vanessa has a 20/80 chance of survival. Ours is 20. The enemy has 80. So we have to pray.” At the hospital lobby, Vilma bowed her head, “Lord, even if it’s just one percent, I will hold on to that hope.” The next day, by a miracle, Vanessa suddenly woke up from her coma. Providentially, too, Dr. Ibañez-Guzman had previously seen a few years ago two patients who • Glady V. Ramo• Glady V. Ramos WORD & LIFE, VOL. 36 . XX, NO. 3 had experienced similar symptoms. Suspecting Wilson’s Disease after having ruled out hepatitis, Dr. Ibañez-Guzman subjected Vanessa to 24-hour urinary copper test, serum ceruloplasmin test, and slit lamp examination for K-F (Kayser-Fleischer) rings. While waiting for the results, she advised Vilma that if Vanessa indeed had Wilson’s Disease, there were no medicines available in the Philippines to treat it. The only one she knows who might have this medicine is her former patient who lives in Sariaya, Quezon, a provincial town more than 100 kilometers south of Manila. With no specifi c address available and with just vague directions from what another doctor recalled, Vilma’s siblings trekked to Sariaya to look for Ronald Malabanan. When they found him, they bought some of his Cuprimine, the medicine his relatives intermittently send from the US to keep his Wilson’s Disease in check. When Vanessa’s sickness was confi rmed, she drank the fi rst Cuprimine. Fellow patients who stayed in the same room, and their relatives, erupted in jubilant cheers. Finally, her mother’s long search for what was truly ailing her daughter had an answer. But because Wilson’s Disease is incurable and permanent, the battle was far from over. A Daughter’s Last Wish After continuously taking Cuprimine and restricting copper in her diet, Vanessa’s condition improved, and she was able to go home. Vilma, in the meantime, tried to know more about her daughter’s “mysterious illness” through the internet. Being a single mother, she tried to balance her time taking care of her sick daughter and two other children, and working as a secretary at a furniture export company. Money was tight, but she tried her best to provide for her family. Her boss, knowing her situation, tried to help by securing Cuprimine from relatives and friends in the US and Hong Kong whenever he can. (It is prohibited to buy Cuprimine in these countries without a prescription.) However, even with constant medication and regular checkups, Vanessa’s abdomen again enlarged and her liver disease progressed. One day, as Vilma was wiping her daughter with a warm towel, Vanessa told her, “Mommy, something will happen today. I want you to be ready. The only reason I still fi ght is because of you. But if it were only up to me, I’m already tired . . . .” Vilma couldn’t understand what her daughter meant. She tried to give Vanessa her medicine, but she refused. Then fl uid, like water, fl owed out of Vanessa’s mouth. “Mommy, do you know what that is?” Vanessa asked, still with her eyes closed. “That is the pain felt by the people who are sick like me (with Wilson’s Disease). I just brought it out . . . .” Vilma was even more puzzled by what her daughter had said. “My whole heart, my whole soul,” Vanessa declared, “I’ve already given to Jesus . . . . Please tell all those who’ve helped us, ‘Thank you.’ ” Just then, Dr. Ibañez- Guzman called and requested Vilma to convince her daughter to go back to the hospital. Vanessa agreed. However, in the taxi cab, as she lay in her mother’s arms, Vanessa lost consciousness. When they got to the hospital, the doctors tried to revive her several times to no avail. Vanessa died on March 27, 2001. She was only 16. A Mother’s Mission It was only after Vanessa died that Vilma found out that Mary Graper, then a board director of Wilson’s Disease Association (WDA) in the United States, had emailed her. Mary had requested her to submit some requirements so that WDA can send her 3-months’ supply of Cuprimine for free. Vilma thanked Mary but informed her that Vanessa had already died. Herself a mother of two children with Wilson’s Disease, Mary sobbed for Vilma’s loss and tried to comfort her. This was the beginning of a beautiful friendship that will eventually bear much fruit. In 2003, recognizing her care and commitment, WDA appointed Vilma Dee as the Support Contact Person in the Philippines. By November of the same year, Vilma, from her own limited re- A healthier Vanessa (right) when she was 11 years old, with her cousin Barbara, 5 sources, established the Wilson’s Disease Awareness Center – Philippines (WDAC-Phil). The Center, based in her modest house, seeks to spread awareness about the disease so that it is properly diagnosed and treated. Little did Vilma know just how important a role she will play in the lives of Wilson’s Disease patients. WDA in the US started a donation program in cooperation with Merck (the former manufacturer of Cuprimine and Syprine, another medication for Wilson’s Disease; Aton Pharmaceuticals is now the current manufacturer) and MAP International. The very fi rst recipient of this program in the world was an 11 year-old Filipino, Renato Cruz II. His mother, Sonia Casabuena, had seen Vilma’s name in the WDA website and contacted her, asking for help. Renato, previously an outgoing and active boy, had been diagnosed with Wilson’s Disease in 2003. But Sonia couldn’t fi nd any medications for him. Vilma facilitated her request, and since 2004, Renato has been receiving a continuous supply of Syprine through the donation program. Renato, Marielle, and Ronald are just some of the many patients whom Vilma has helped. She would travel many miles at her own expense, just to deliver the medicines because the patients’ families are usually too poor to go to her house. Like a mother to these patients, she would keep track of the supply of the medicines and even remind their parents to submit the requirements so that she can facilitate the request for the next supply. But more than the medicines and the information, Vilma provided the moral support that the patients and their families needed. Shares Sonia, “Vilma made things easier for me to cope with the situation of having a child with Wilson’s Disease. Spiritually, morally, emotionally, . . . She will help you understand what’s happening when doctors can’t. She will help you understand in order to accept the situation. Renato is able to draw strength from her. He is encouraged because she talks to him. He needs someone who can look at him, not with pity, so that he will be strong. She gives him the courage to go on.” A Meaningful Sacrifi ce Mary Graper, now the president of WDA, praises Vilma, “I never imagined she would be doing as much as she has been doing for the last seven years (since her daughter died) . . . . Despite her great loss, Vilma is determined to help others in the Philippines so that they would not suffer the same loss as she had.” Vilma thinks her daughter’s death would be in vain if she didn’t help others. She believes this is what Vanessa meant when she said, “That is the pain felt by the people who are sick like me . . .” Vilma explains, “Vanessa had to die . . . so that others may live.” Indeed, if the disease is properly diagnosed early, and if patients are given proper lifelong medical treatment and frequently monitored with laboratory testing, people with Wilson’s Disease can lead normal lives. And that is Vilma’s hope. A girl from Turkey, whom Vilma also assisted with the donation program, is now a broadcaster. Ronald Malabanan is now happily married and working at an electronics fi rm. But there are still many others who have gone undiagnosed, misdiagnosed, or untreated. Three children from Palawan, all siblings, have not been screened for Wilson’s Disease because their family does not have the funds to fl y to Manila or pay for the tests. For Vilma, there is still a lot of work to be done, a lot of children to help. Good thing her heart is big enough to accommodate all of them. For more information or to help in any way, contact: Vilma Dee Wilson’s Disease Awareness Center – Philippines 066 Sto. Niño St., Carmencita Village, Talon 3, Las Piñas City 1701 #805-8180 / # 0906-2917795 Email: wdphils@hotmail.com Before she died, Vanessa had assured a friend, “I’ll take care of telling the Lord what I would like to happen here on earth.”