MANILA, Philippines - All mothers are heroes, but those who mother special children are particularly extraordinary. Meet the mothers of children born with what are medically called ?orphan disorders.?

The United States Orphan Drug Act defines a rare disorder as any condition affecting less than 200,000 Americans. The European Union considers a disease a rare disorder if it affects five or less 10,000 individuals. In the Philippines, a rare disorder is one that affects one in every 20,000 individuals.

Rare disorders are at the bottom of the priority list of the government, health organizations and even society. There are very few medical practitioners who specialize in them and even fewer pharmaceutical companies that develop or market drugs intended for these disorders.

So what is a mother to do when she has an ?orphan? child? In spite of the daunting circumstances, she musters all her strength and gathers her resources to keep her child alive.

?Every child has the right to live, and early diagnosis is the key. Every day matters,? Cynthia Magdaraog, president of the Philippine Society for Orphan Disorders (PSOD), tells me over coffee one rainy afternoon.

Magdaraog is mother to Dikoy, who is now 30 and suffers from Pompe Disease, a rare neuromuscular genetic disorder that occurs in babies, children and adults who inherit a defective gene from their parents.

Dikoy was like any other little boy until the age of 9, when his muscles began to deteriorate. By age 10, he was initially diagnosed to have muscular dystrophy. A correct diagnosis was made in the US when he was already 16, and it was heartbreaking to his parents.

Nevertheless, Dikoy continued to go to school, eventually earning a degree in Industrial Design from the College of St. Benilde. At the age of 28, he became the recipient of Enzyme Replacement Therapy (ERT) treatments that were given free of charge by a company called Genzyme Corp. USA.

Magdaraog says that without treatment, Dikoy was only expected to live until age 30. ?We received the news in December 2006 that he was eligible for treatment a month before he turned 29,? she shares. ?It was definitely the best Christmas gift our family had ever received.?

Today, Dikoy runs his own PC business from home and has been a recipient of the Go Negosyo award for people with disabilities. He gives encouragement to other Pompe patients like himself through his blog, www.fightpompe.com

Creating awareness

PSOD was founded by a mother herself, noted geneticist Dr. Carmencita David-Padilla, who is currently the director of the Institute of Human Genetics at the National Institute of Health in Manila.

Together with several other mothers and parents of orphans, the PSOD strives to help create awareness for these rare disorders and also to raise funds to provide for many other families who cannot afford the high cost of treatment.

Mothers like Susan Duran cares for now 10-year-old Jerick, who is afflicted with the very rare MPS Hunter Syndrome. At age five, Jerick lost all sense of pain, and his condition has slowly deteriorated since his diagnosis five years ago. Today, he can no longer walk or talk. There are only two known cases like his in the entire country.

In spite of this, his mother remains buoyant and hopeful, as she tirelessly cares for him in their small house in Cavite.

Then there is Dory Marco, who has three children, all born with the very rare Maple Syrup Urine Disease (MSUD)?an inherited disorder that disrupts the metabolism of certain amino acids. The lack of early identification and treatment can result in serious medical consequences, including mental retardation, developmental delays and/or death.

She is mother to Genevieve Faith, 14, who is slightly brain damaged because of a delay in diagnosis, and Angelo, 7, who receives regular physical therapy. A middle child also afflicted with MSUD passed away a few years ago.

Marco is now a single mother after being abandoned by her husband, who could not take the pressure of caring for three children with MSUD. She is head of the MSUD parents support group, and, despite having her hands full, she continually lobbies for support for other parents like herself.

Mead-Johnson is the only company that manufactures milk crucial to MSUD patients, and Marco says the company has been quite generous in giving milk donations to her and other families over the last 15 years or so. Each can of milk costs P3,000, and every family has an allocation of six cans per month. To date, there are 20 surviving MSUD children all over the country.

Living proof

Among them is Louise Francine Reano, 7, who is a first grader and a first honor student at her school. Very bubbly, Francine is living proof that when a child is diagnosed early enough and given the correct treatment, she has a fighting chance to make it in the world.

Michee Cadhit is mom to 2-year-old Iana, afflicted with Charge, a recognizable (genetic) pattern of birth defects which occurs in about one in every 9,000-10,000 births worldwide. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child.

Cadhit says that having a child with an orphan disorder teaches you many, many things about yourself.

?More than the difficulties, she has become our greatest blessing. Iana teaches us patience, love and anchors our faith in God more than ever.?

Iana, Cadhit says, has been the recipient of so many miracles that even her doctors are baffled.

?We still have a long way to go, but it has become easier with faith and with having a group to lean on like PSOD. We derive strength from one another.?

There is an instant kinship formed among mothers who have known pain of a deep kind. The mothers who make up PSOD are in a different league all together.
The strength and courage they show is awesome. One is humbled by the resiliency and grace that they share with the world in spite of their own struggles.

Mothers who fight for the very life of their children truly become superhuman.

For more information on PSOD, call 6364675 or visit www.psod.org.ph