MANILA, Philippines?The growl was incessant, indicating her annoyance at the thought that we were poking into her love life.
Each time Maria Katherina ?Kcat? Yarza, 24, makes this sound, interpret it as her means of protest. Neurofibromatosis Type 2 (NF2) has limited her communication with the outside world to growl patterns, hand gestures, lip reading and note scribbling.
Kcat, a T-shirt designer and consumer reviewer, was diagnosed with NF2 three years ago. It is a rare genetic disease that, according to doctors at the Philippine General Hospital, emerged from the respective lineages of her parents, Madge and Edgardo.
Early detection of NF2 may prevent its spread, and Madge blames herself for the oversight, saying she became so busy contributing to the family?s keep.
The early signs were the ?warts? forming on Kcat?s face and arms starting when she was an infant and continuing until she was a teenager. She also slept with her eyes wide open?something the family dismissed as one of her weird antics?and frequently complained of headaches.
Things got so bad that she experienced double vision and severe, throbbing headaches, and the right side of her face became disfigured and eventually paralyzed.
The diagnosis of a Manila-based doctor, whom Madge refused to name, was juvenile rheumatoid arthritis leading to polio. But a second opinion sought from doctors at the PGH revealed that Kcat was suffering from NF2.
While a link between skin abnormalities and NF2 may seem odd, the PGH doctors said the disease was the result of a merging of multiple sources of Neurofibromatosis Type 1 (NF1) on either side of the Yarza family. (Leprosy is said to be the best example of NF1.)
Kcat?s parents looked into their respective families for NF2 traces.
Madge found nothing that could be attributed to it. But she had a number of sebaceous cysts removed from various parts of her body, and remembered relatives with skin abnormalities that, she thought, were caused by a misguided application of facial creams.
Edgardo himself had lumps in his body scraped off, ?but nothing so serious that we could directly attribute to NF2.?
Although it was uncertain that the Yarzas had NF1 bearers among their ascendants, it was presumed that there were, and that Kcat was the unfortunate recipient of it after generations of blood merging.
Madge said that when she learned of Kcat?s condition, she was the most affected: ?It was like I was going to die.?
She said she was devastated to learn that Kcat had also lost her sense of hearing.
From what Madge gathered from the doctors, the growth of nonmalignant tumors in a certain part of Kcat?s cranial nerve damaged her auditory vestibular nerve, which is responsible for transmitting sensory information from the inner ear to the brain.
A two-inch tumor was found in each of Kcat?s left and right ears, another in her throat, and yet another in her spinal column.
Her surgery records show that she has undergone major operations?sub-occipital craniotomy, stereotactic radiosurgery and insertion of a gastronomy tube to ease the swallowing of food and liquids.
She also had psychiatric treatment for depression after the loss of her hearing. And in between trips to the operating room, she suffered from pneumonia and thoracic complications.
Like other girls her age, Kcat had nurtured vibrant imaginings of a career in advertising.
Before she was laid low by her ailment, she had a semester to go at the College of the Holy Spirit, and she juggled time between thesis defense, a solo graduation exhibit, and some 20-plus units to fulfill requirements.
She kept a tight group that did charity work in her early school, Don Bosco Manila, but she spent most of her time at home, honing her skills in photo editing.
Kcat is aware of the progress of her friends, who are either raising a family of their own or holding down a job, and she is happy to see them during gatherings at their home on Velasquez Street in Mandaluyong City.
The left side of her body is now paralyzed, but she regards her disability like it were a mere part of her system and does not look back with regret.
?There?s something in our daughter that keeps her revved up every day,? said her mother. ?She is positive in her outlook, quite a warrior in her state of mind, and the wellspring of hope never stops flowing. She overcame her situation with formidable spirit, which, perhaps, her school has reared in her.?
Such an attitude is in contrast to her father?s.
One recent evening at the Yarza residence, Edgardo did not mince words in saying how deeply his daughter?s condition had affected him.
His words and voice were bitter as he searched for answers to ?why? and ?why me,? in the process pointing out that others were living full lives despite wrongdoing.
?This is certainly not an easy time for us,? said Madge, who is herself battling lupus, a disease characterized by an overactive immune system that attacks even healthy cells.
She added: ?We are always confronted with hopes and prayers to mobilize ourselves. Our sources are depleted, and my physical limitations also hamper our progress. Everything is calculated with extra effort.
?I worry about that time when I can no longer cope with the demands of taking care of my daughter. I have two other children who will raise their own families, and Kcat will be left alone.?
Beauty of life
But despite her parents? apprehensions, Kcat is counting her blessings.
She wrote in her blog: ?What am I sick of? I am aware that I got NF2, but I see that as part of me only. Hindi ako bingi, tahimik lang (I am not deaf; I am only in a state of quietude). Everything happens for reasons, and life is like a Friendster-connect to God [and] why He put me in this condition. I have never questioned life on this.
?It is true that I am suffering inside, but don?t you think we should go beyond pain to discover the beauty of life? I constantly smile despite the pain I experience inside.?
Kcat was recently fitted with a cochlear implant that made her hear again. She launched her first-ever T-shirt design called hEAR, sold each T-shirt for P300, and reportedly made P20,000 last year.
She gets paid by a company in the United States for the consumer reviews she writes?and on that recent evening, she happily clicked on the computer to show off her work.
But hearing her mother speak with anticipated desperation made Kcat somewhat angry.
She managed to relay her thoughts to Madge through slurred speech: ?Mommy, we will get well. I will do everything that I can despite my disability because life must go on for us.?