Tuesday, July 5, 2011

KCAT CAN: Hang in there, Four Turtles

Like me, Niccolo, Marie, Ashley & Dondon has NF2 as well and your trash could save their lives..

Hang in there, Four Turtles
by Maria Kathrina Lopez Yarza 
July 4, 2011

Your trash may help save the lives of four siblings afflicted with the same rare disease…

In a Korean telenovela that I have been watching recently, a version of the famous fable “The Turtle and the Hare” was mentioned.

In the said fable, the hare loses in the race as a result of his over self-confidence. The hare challenges the turtle for a rematch and once again, the turtle wins. Why? It is a swimming race and turtle proves to be a better swimmer than the hare!

This reminded me of the Remigio brothers and sisters, or the Four Turtles as they call themselves. Like me, they are inflicted with Neurofibromatosis Type 2 (NF2).

I met the Remigio family in 2007 after they saw me in a TV interview where I mentioned about wanting to meet people with a similar disability as mine. Lola Linda Remigio contacted us and I got connected to her grandchildren, Marie, Ashley, Niccolo, and Dondon — aka The Four Turtles.

The Remigio kids inherited NF2 from their mom, Lissa who died two months after giving birth to her youngest child Dondon. Their dad, Alladin, sunk into depression thereafter, unable to earn a living to support the family.

In October 2009, Alladin, 39, died due to chronic kidney disease, leaving the four Remigio kids under the care of their Lola Linda.

In 2008, Marie (the second eldest child) and I brainstormed on how to start a fund-raising campaign to raise money for their medical needs. We created a website and called it “Four Turtles”. A turtle symbolizes longevity of life.

I made a logo for their campaign. It is a silhouette of a turtle with a different color for each foot, representing each one of them: Niccolo- fuchsia, Marie - violet, Ashley - blue and Lyndon - red. They are four different individuals, but they are in one shell, fiercely hoping, surviving and battling together, as one. They were full of hopes then. They were an inspiring sight to behold. They were symbolic of a blazing hope in the midst of seeming hopelessness. I cheered for them.

Fast forward to today...

To date, there is no cure for NF2. But our hope does not fade away, with research studies for its cure. Just like a turtle, it may be slow in pace, yet it is moving, it is progressing, with the flames of hope undying and waiting to reach the finish line, finally to discover a cure for us.

Almost five years had passed. They are grown-ups now. I wondered how they have been doing. God never fails to amaze me.

The next day, Lola Linda eagerly met up with my Mom. Lola Linda has been so worried about the recent results of their MRIs, all of which show aggressive development of tumors.

To add to her worries is the growing fear and sense of hopelessness gnawing in the hearts of the Four Turtles —that they too would all die sooner, as what they had witnessed in the cases of their mother and maternal grandmother who suffered from the same disorder. “I would die soon, anyway…,” one of them even said.

Lola Linda is struggling to help her grandchildren, physically and emotionally. It gives me relief that her talks with my Mom somehow alleviate her fears and worries, and give her the hope to carry on.

Loving grandparents

Niccolo, 21, was diagnosed with bilateral acoustic neuroma, NF2. He underwent head surgery in June 2008 for the removal of the right acoustic schwannoma, that caused total hearing loss on his right ear. His latest MRI study shows slight interval increase in size of the left acoustic schwannoma. This needs to be monitored regularly every six months thru MRI, and should abnormality appear, another surgery might be an option.

Marie, 18, is likewise diagnosed with bilateral acoustic neuroma that also affected her hearing. She also underwent major surgery in February 2008 for the removal of a tumor in her cervical spine that caused immobility in her left extremities. Her June 2011 MRI showed slight progression in her right auditory canal that needs further monitoring.

Ashley, 17, also has bilateral acoustic neuroma. It affected her auditory nerve, with total hearing loss in the left ear and moderate hearing loss in the right ear. She often feels dizziness, affecting her sense of balance, which is why most people think of her as a clumsy person. Her latest MRI showed interval increase in size of the acoustic shwannomas in both of her auditory canals. Their neuro-otologist has recommended her to undergo a cochlear implantation to save one of her auditory nerves; although not urgent, it is a must.

Dondon, 14, was also diagnosed with bilateral acoustic neuroma. He underwent head surgery in February 2009 for the removal of an acoustic neuroma on his left auditory nerve. Also, his last MRI study in June 2011 showed increase in sizes of the acoustic shwannomas, and needs regularly monitoring.

The four of them are under the care and support of their grandparents, Atty. Antonio Remigio and Mrs. Linda Remigio, since their mother’s demise.

To raise funds for their medical expenses, their grandparents started collecting broken appliances, collect the copper in them, sell them to junk shops, and use the collected money for their medical needs.

If you are going to dispose your broken and non-repairable appliances, why not donate them instead? Your trash can help save their lives. Kindly direct all donations to Linda Remigio: residence phone # 8476820, cellphone # 09152008242, or email at

For as long as life breathes in us, we must continue to hope, to believe, to trust, to run our race, and to finish it with flying colors. Without hope, the meaning of life becomes less and less. And it is not good, for one, for some, and for all. Life must go on despite the many odds that come our way. It is true that ‘hope is the anchor of the soul’; and that ‘faith is believing in things hoped for’. Faith and Hope are spiritual graces from God; therefore, to look at a situation and to say that ‘it is hopeless’; or to look at one’s self, and to say that ‘I am hopeless’, is closing the door in the face of God.

Just as we have been given hope, we carry that hope; and for as long as we carry that hope, we learn to spread hope; and as we spread hope, lives are inevitably changed, and saved. What beautiful meaning hope gives to life! Hold on, Four Turtles!

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