Ten-year-old Van Ryan Malud has a dream for the future. He’d love to become professional basketball player like his idol, San Mig Super Coffee star James Yap.
But there is one problem hampering his dream. He was born with a very uncommon condition called Osteogenesis Imperfecta or OI. Also known as brittle-bone disease, OI is a genetic and inherited disorder characterized by fragile bones that break for no known reason.
Aida, Ryan’s mother, said: “Even a sneeze could fracture his backbone or ribs. In fact, we hold him like a delicate piece of glass because we could unintentionally break his bone if we grasp him with so much force.”
Indeed, it has been an arduous journey for this spirited mother since Van Ryan was diagnosed with OI when he was still one and a half years old.
Managing symptoms
Although there is no cure for OI, symptoms can still be managed by treating broken bones immediately, taking care of the brittle teeth, using pain medication as well as undergoing physical therapy and surgery. Using wheelchairs, braces and other aids is most recommended.
With the help of Aida—who had to quit her job so she could monitor her son more closely—Van Ryan has proved himself to be a determined little fighter, ready to meet all the challenges that lie ahead.
“The thing about having a child with this sort of condition is that some people feel sorry for you, as if you’ve been punished by God, but that’s nonsense,’’ Aida said. “We feel incredibly lucky to have Van Ryan just as he is. We don’t feel sorry for him, because he doesn’t feel sorry for himself.”
Despite being confined to a customized wheelchair (thanks to one donor from the Rotary Club of Makati San Lorenzo as well as the team from the Velez College of Physical Therapy), Van Ryan is able to continue to attend school. He is currently in Grade V at the Sto. Niño Institute for Science and Technology in Batasan, Quezon City.
Supportive
“Despite his young age and diminutive size, Van Ryan is mature and has many friends at school who are all supportive. We all made sure everything are within his reach at home and at school so he would no longer move unnecessarily,” her mother said.
Aida reminisced that doctors and experts who are seeing his son stressed the importance of using multidisciplinary approach that involves a care team of different specialists—orthopedic surgeons, geneticists, endocrinologists and others as needed.
Aida said: “Unfortunately, this will involve a lot of money, which we do not have. At the moment, we can only hope for support from kind individuals, groups and organizations like the Philippine Society for Orphan Disorders (PSOD), which has a list around 20 individuals who share the condition like that of my son.”
Appealing
PSOD president Cynthia Magdaraog said: “This is why we have been appealing continuously to lawmakers to pass the Rare Diseases Act of 2014 (Senate Bill 2098) that will provide an appropriate, responsible and sustainable drug funding for rare diseases as well as create a Rare Disease Registry, which will contain data on patients and orphan drugs needed by afflicted patients.”
Magdaraog added that without the funding and support from the national government, individuals like Van Ryan can only rely on donations, which is not sustainable.
Finding treatments or ways to manage rare diseases such as OI is a challenge because treatment for rare diseases is very expensive and not easily available.
There are already more than 5,000 rare diseases identified and that number is steadily rising as previously unexplained conditions are being recognized. It is estimated that one in 17 people will be affected by a rare disease at some point in their life.
“If we consider this, rare diseases are not as rare as we thought and thus, our lawmakers’ focus should be on making sure that no one who suffers from one is left behind,” Magdaraog urged.