MRT passengers pass the hat for 6-year-old cancer patient

Cleofe Navarro, 54, carries her granddaughter Ashley Ann Nepomuceno, 6, inside the MRT. Nepomuceno suffers from a rare skin disease called epidermolysis bullosa and has stage 1 bone marrow cancer. Photo by Kristine Angeli Sabillo

MANILA, Philippines – When 54-year-old Cleofe Navarro boarded the Metro Rail Transit (MRT) carrying her granddaughter Ashley Ann Nepomuceno, there was a momentary silence among the passengers.
A couple of women stood up and gave away their seats. Navarro, cradling the six-year-old child, smiled shyly. “Pasensya na po kayo,” she said, seemingly embarrassed at her predicament.

In her arms was a child with limbs covered in bandages, head bleeding despite the gauze.
A visibly weak Nepomuceno wailed in pain while Navarro positioned her away from the sun.

Suddenly, a woman sitting across her handed over what seemed to be money. A couple of minutes later, one or two other good Samaritans did the same.

Another one offered her a wad of tissues to wipe away the blood.

“Salamat po sa tulong n’yo (Thank you for your help),” an overwhelmed Navarro said aloud. Meanwhile, Nepomuceno remained silent, perhaps feeling much better because of the cooler temperature.

It was at that point that this reporter started a conversation with Navarro.

Navarro said Nepomuceno was suffering from stage 1 bone marrow cancer and a rare skin disease called epidermolysis bullosa, which causes blisters to form on the skin.

They had just been to St. Luke’s Medical Center where Nepomuceno was supposed to undergo electron microscopy, a test that would have showed the doctor the status of her cancer.

Passengers chip-in

In a phone interview the next day, Navarro told INQUIRER.net that they rode the MRT on their way to the Philippine General Hospital (PGH) where Nepomuceno underwent physical therapy. The six-year-old child collapsed the last time she had chemotherapy and was trying to regain strength for the next one.

Her grandmother revealed that they were not able to avail of the electron microscopy because she only had P3,000 in her wallet. They needed P7,200 for the procedure, which was already a discounted price. St. Luke’s was not willing to accept a promissory note for the laboratory exam.

Navarro was able to raise P1,200 from those who gave them money at the MRT.
She said she really wanted to ask for help but was too embarrassed. Fortunately, the people were moved by Nepomuceno’s condition, prompting them to contribute.
Navarro said it was not the first time that it happened.

Six times a week, the 54-year-old grandmother would carry Nepomuceno from their home in Angeles, Pampanga to St. Luke’s in Quezon City and then the PGH.

She would often ride the MRT and there were days when people, without being asked, would hand over money to help in Nepomuceno’s medical bills.

Navarro was quite desperate that day because they needed the money for the electron microscopy and because Nepomuceno had started bleeding after complaining of feeling pain in her head. She said the wound was from a type of blood transfusion procedure.
Until now they have yet to raise the needed money for the said laboratory test.

Cash-strapped

Navarro said they already have a lot to thank for, especially since Nepomuceno’s six chemotherapy sessions, two of which are already finished, are covered by the Philippine Charity Sweepstakes Office.

In addition to meeting her favorite television host Vice Ganda last year, Nepomuceno was also featured in the show “Wish Ko Lang.” However, that was back in 2010 when she was not yet diagnosed with cancer.

Now, they have to raise at least P6,500 per week for skin medication.
While the bone marrow cancer can be cured after four more sessions of chemotherapy, epidermolysis bullosa is a lifetime illness.

Younger patients who suffer from it are called “butterfly children” because of their fragile condition. Among the most famous of these children is Johnny Kennedy who was the subject of the documentary “The Boy Whose Skin Fell Off.” Kennedy died in 2003 because of skin cancer caused by the said disease.

The whole Navarro family is working to fund Nepomuceno’s medication. Navarro said her two younger children have stopped studying to help. Her son now drives their tricycle while her middle child works as a sales lady. Her husband is a wood carver who earns P1,800 a week.

Nepomuceno’s parents, the mother being Navarro’s daughter, are currently unemployed after their contract at the Clark Freeport Zone, where they did laundry work, expired. They are waiting to be re-hired by their previous employer at a call center agent.
“’Pag kinulang, naglalaba, namamamlantsa (ako) sa mga kumareng mayayaman. Nakaka P1,000 din maghapon,” Navarro said.

(If our money is not enough, I also do the laundry and ironing for friends who are rich. I am able to earn P1,000 a day.)

A painful childhood

Unlike other children, Nepomuceno could not go outside and play. She does not have the strength to do so and should not be exposed to the sun.

But Navarro said Nepomuceno is at her best right now. She used to be in worse pain, suffering from the occasional nose bleed and severe blistering.
“Her skin looks beautiful now,” she said in Filipino.

Lately, however, the summer heat has been taking its toll on Nepomuceno, with their old air conditioning unit destroyed by typhoon Ondoy’s flood waters in 2009.
Sometimes, Navarro will have to rush Nepomuceno to a small town hotel in the middle of the night so the child could sleep in peace.

Another troubling possibility they are facing is Nepomuceno’s skin disease resulting in blindness.

In the end, Navarro does not mind all the hardships and sacrifices that her family are going through.

“Gusto ko pong tumagal si Ashley (I want Ashley to live longer),” a sobbing Navarro said over the phone.

For those who want to help Nepomuceno, e-mail us at social.media@inquirer.net so we can connect you to the Navarro family.

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