Nurse seeks help for son with Wilson disease

MANILA, Philippines - Forty three-year-old Bernardita Bernardo is a licensed nurse but she was still unprepared when her only child was diagnosed with Wilson disease.

Bernardita could not imagine her son Alec Joshua, 12, suffering from a rare inherited disorder that is now threatening his life.

She admitted that she initially got angry with God, until she realized that she was still blessed with wisdom to understand the boy’s condition.

“I have so many dreams for my son so I was really devastated. Even if you are a nurse, you would not be able to prepare for this. But eventually you have to accept and do everything to save him,” she said.

In its website, Medline Plus describes Wilson disease as a disorder that causes a body to retain copper.

“Normally, your liver releases copper it doesn’t need into bile, a digestive fluid. With Wilson disease, this does not happen. Copper builds up in your liver and injures liver tissue. Over time, the damage causes your liver to release the copper directly into your bloodstream. The blood carries copper all over your body. Too much copper can damage your kidneys, liver, brain and eyes,” the website said.

According to Bernardita, the boy started manifesting symptoms in November 2009. “We observed that his legs were getting weak. He would be warm but he did not have fever. He was just warm blooded. And his eyes became yellowish.”

A month later, Alec was diagnosed with Wilson disease at the UST Hospital and his mother felt like the world fell on her.

“We didn’t know what to do. I checked many research materials to understand his condition. I was so worried about the money because this is an expensive illness,” she noted.

Bernardita was a volunteer nurse at the Philippine Red Cross when Alec was diagnosed and she had to stop working to take care of him. Her husband Nicanor Tapit, on the other hand, is a barangay tanod.

Alec’s condition had deteriorated and he now needs a liver transplant to save his life.

Bernardita already took and passed all the laboratory tests to become his donor.

Alec was already in Grade 5 at the Aurora A. Quezon Elementary School in Quezon City, but he stopped going to school last year.

He dreams of becoming a soldier or a policeman when he grows up.

His family is eyeing to have his transplant in Chiang Gung Memorial Hospital in Kaoshiung, Taiwan where the procedure is cheaper at a cost of around P2.4 million. In the Philippines, the operation will cost P4.5 million.

“We don’t have money for that especially now that I cannot work. He needs close supervision. There are so many foods that contain copper, which we don’t know, and he cannot eat them,” Bernardita added.

She estimated that in a month, Alec needs at least P5,500 for his medications and laboratory tests, an amount that is too much for the family to handle.

Because of this, Bernardita had appealed to kind-hearted individuals to help them raise funds for Alec’s life-saving transplant.

Alec’s family can be contacted at their residence in 62 Women’s Club St., Santol, Quezon City or at (0917) 734-9527.

Donations can be deposited in BDO Account No. 347-007-2870, under the account name of Alec Joshua Bernardo or in BPI Account No. 3279-0337-78, under the account name of Bernardita Bernardo.