From MADGE

Dear Everyone:

I am writing in behalf of my 24-year old daughter Maria Kathrina Yarza (Kcat).Three years have past after Kcat was diagnosed with NeurofibromatosisType 2 (NF2) a very rare genetic disease. Neurofibromatosis Type II) is an inherited disease. The main manifestation of the disease is the development of symmetric, non-malignant brain tumours in the region of the cranial nerve VIII, which is the auditory-vestibular nerve that transmits sensory information from the inner ear to the brain. Most people with this condition also experience problems in their eyes. NF II is caused by mutations of the "Merlin" gene which probably influences the form and movement of cells. The principal treatments consist of neurosurgical removal of the tumors and surgical treatment of the eye lesions. There is no therapy for the underlying disorder of cell function caused by the genetic mutation.

Kcat had undergone multiple surgeries related to her NF2.

On January 2005, she underwent suboccipital craniectomy for the excision of her left craniovertebral junction tumor, but operation was aborted due to unsafe opening of the dura. In June 2005 Stereotactic Radiosurgery (SRS) was done for her right craniovertebral junction meningioma and symptomatic vestibular schwannoma on the left. A month after the SRS, kcat started to suffer from the swelling of the treated tumors. We have been in and out of the hospital due to severe headache. In October 2005 she had an emergency operation, symptom of hydrocephalus was seen in her CT scan, VP shunting was done. Five days after the surgery, her health started to deteriorate, she developed hospital acquired pneumonia, her swallowing was affected, her left extremeties were paralyzed, her hearing likewise was starting to deteriorate. She was supposed to undergo thorasic surgery for the insertion of tube to drain out the pus in her lungs caused by pneumonia. But God is great, Kcat was already in the operating room when her doctor broke the news to us that they are declining the surgery, the pus was already gone. I believe this is a miracle. She stayed in the hospital for two months due to unknown cause of her febrile episodes. She went home 5 days before Christmas with the tube in her nose (NGT) for her food and fluid intake. In March 2006, she underwent another surgery for the insertion of gastrostomy tube since she still had difficulty in swallowing fluids and food.

In January 2006, Kcat totally lost her hearing. She could not hear us anymore. It was like a nightmare for us. We were already told about this during the initial consultation with her Neurosurgeon and I myself could not believe it would happen. It was so hard to break the news to Kcat that she can no longer hear us, this was the hardest part in our life. She was so anxious, that she could not sleep, and had sort of hallucinations. That was Holy Week of 2006, We brought her to a psychiatrist to help her calm down and gave her medicines to put her to sleep. Monday after Easter Sunday, a miracle happened again. When she woke up for breakfast, she told me,” Mommy, We will get well” since I too has a chronic disease (Systemic Lupus Erythematus). “I will do everything that I can despite of my disability, LIFE MUST GO ON”. I was really crying thanking God for another miracle.

From then on, we just let the day go by. Kcat started to have her regular rehabilitation at the Phil. Orthopedic Center to regain her strength. She started practicing her artworks in the computer again, explore and do self study thru the internet. And now, she developed more being a fine artist. But we never lose hope that she would be able to hear again. I also consulted her ENT, Dr. Elmo Lago, who confirmed us about Kcat’s total deafness two years ago. I asked if Cochlear Implant would help her, he said it would be impossible since both the nerves in her ears were affected, but he said “Never lose hope, keep on praying, hanggang may tenga may pag-asa, Miracles happen only God knows” , Kcat and I hold on to what he said. We never lose hope we kept praying. “His Will be Done”

A few months ago, little did I knew that Kcat was also observing the neuro case patients in her therapy like what I was doing. I told her to do some research on the net about Vertigo since she still cannot walk and has no body balance yet with continuous tinnitus in her ears. I too have vertigo and I take some medicines for that. So we taught this could help, that is why I told her to research before we consult her ENT and ask about this. More than what she was searching, she came across the Auditory Brainstem Implant (ABI), this device was designed to help NF2 patients to hear sounds again. GOD IS GREAT! She was up til 6 am and broke the news to me. I was so ecstatic about the news and immediately confirmed this with her Neurosurgeon, Dr. Willy Lopez. He confirmed to me about the ABI and one transplant was already done here in the Philippines. He told me to do more thorough research and find out the doctors who did the procedure here. I did! I went on researching on the internet and found the website of the House Ear Institute. I sought for help on how Kcat would be able to have that implant done in the U.S., since I read in one of their articles that they will be having another set of patients for their study. But I was unaware that the article I read was posted in 2005. I was two years late. But still I got a response from them that my concern was already forwarded to the proper professional who could assist me. To my GREAT surprise, I got an email from Dr. Derald Brackmann, one of the principal author of ABI and likewise handles the management of NF2, his expertise in the field of neuro-otology is highly respected in the whole world with his numerous awards in his field. WOW! Isn’t this GREAT! He frankly told me that they could not extend medical assistance to my daughter since it is too expensive in the U.S. but he offered to review Kcat’s case. He asked me to send all her MRIs and other medical records. Luckily, we were also able to meet the first neuro-otologist here in the Philippines who did the ABI and Cochlear Implant, with the help of Dr. Lago and Dra. Rina Reyes-Quintos of the Phil. National Ear Institute. We met with Dra. Charlotte Chiong and referred Kcat for another series of hearing tests including the Auditory Brainstem Response test and the multiple Auditory Steady State Response test. The results all indicated profound hearing lost, but her left ear responded to the maximum intensity but still this is considered the same. Kcat also had her MRI done last September 2007 as the regular routine for monitoring her tumors, results showed that her treated tumors shrinked and are already stable, no more new ones. I sent all the medical data of Kcat in the U.S. for Dr. Brackmann’s review. In less than two weeks, I was shouting with joy, after I read the email from Dr. Brackmann, it was a very positive result. More than what we were expecting, Cochlear Implant could be considered in Kcat’s case. This is really GREAT! But Kcat needs to undergo the promontory stimulation test to assess whether this could benefit her, if this comes out to be positive, she will be able to have that implant and could hear us all again. Great news according to Dra. Chiong, this would mean a lower risk surgery for Kcat. A much better device to hear us all again.

In this regard, may I appeal to your generosity for financial assistance to make Kcat’s wish possible. The device alone would cost a million pesos. And we really could not afford it. I am jobless and could not go back to work anymore, aside from being a fulltime caregiver to my daughter, I too am suffering from a chronic disease which prevents me from getting a job. My husband is a government employee and we still have two kids to support. Your little help would mean so much to us, this would give a chance for Kcat to realize her dreams and aspirations and help hEAR the world again.

Thank you so much. May the goodness of the Lord be always with you and your family.

Sincerely,

MADELIENE LOPEZ-YARZA


P.S Kathrina's story will be featured on Newscentral Channel 23 and re-air on ANC. Tentative date is on Monday Nov. 19.






You may use the following to donate. Any amount is much appreciated.

Account Name: MADELIENE L. YARZA
ITF: MARIA KATHRINA L. YARZA
Account Number: Savings Acct. 1-060-03568-4
Rizal Commercial Banking Corporation Savings Bank RCBC

Kalentong Branch
Mandaluyong City
FOR OUTSIDE THE PHILIPPINES:YOU MAY DEPOSIT YOU DONATIONS THRU:

WACHOVIA BANK, N.A.

Bank details

Intermediary Bank : PNBPUS3NNYC

Wachovia Bank, N.A.

New York, New York

Account Bank with : 2000191133208

RCBC Savings Bank

Beneficiary

Account Number : 8060-00386-8

Dollar Savings Account

Account Name : MADELIENE L. YARZA

ITF: MARIA KATHRINA L. YARZA

Sender to Receiver info: Kalentong Branch

CHIPS UID 382399

Or contact: Madge Yarza

Landline: 533-6976

Mobile Phone: 0927-2459400

0922-8186976

0922-3527111

0906-3360757

Address: 451-M M.Vasquez Street,

Mandaluyong City

Philippines 1550

Email ymadge@yahoo.com or visit Kcat’s website: http://freewebs.com/overtack

MAMI KO 'TO AH ;p