Monday, June 23, 2014
Late last year, I met Joyce Quiñones because of the group Neurofibromatosis Friends (NFF) Philippines. Her younger sister, Shiela was recently diagnosed with Neurofibromatosis Type 2 (NF2) just like me.
She has multiple tumors in the brain that affected her hearing and vision. She needed to undergo surgery to have the tumors removed but her family doesn’t know where to start. Upon my suggestion, they went to see my neurosurgeon, Dr. Willy Lopez, and after that clinic appointment, they were enlightened. Her craniotomy and radio surgery were both a success!
During our Neurofibromatosis Friends (NFF) gathering, I finally met Shiela. She shared that her family had a hard time breaking the news of her condition to her. But after I got to know her, I found out that they were worrying about nothing at all. With Shiela’s personality and attitude towards life, she will certainly get by despite the odds. I know that she can because I could see myself in her.
Today is Shiela’s 24th birthday, and her sister Joyce wrote a heartwarming testimony for her which I am sharing with you.
“Shiela Marie Quinones, who we fondly call “Amey,” was born a few years after me. Amey has a very bubbly personality. She is very friendly and funny, and can easily get along with others. She can laugh at her own mistakes and can effortlessly brighten a room with her sense of humor; the sound of her laughter is very contagious. She is a risk-taker. She believes that we have to take risks in order to have a well-lived life. She is strong and fearful and her faith in God makes her the strongest person anyone could ever know.
When Amey was eight years old, we noticed that something was wrong with her left leg; it seemed weaker and smaller than the right. Doctors ruled out Polio and she continuously had physical therapy for almost two years. She experienced a lot of trials but we never saw her lonely or sad. Having different sizes of legs didn’t keep her from playing and doing things that kids her age do.
In elementary, she was bullied by her classmates because of her smaller left leg but she was able to defend herself without needing any help.
Among the four of us (siblings), Amey is the most diligent in studying, and she was granted a scholarship in college. When we thought that everything was going -well, she started complaining about her eyes and ear. Her vision became somewhat blurry and she had difficulty hearing in one ear. Although the doctors couldn’t find the cause of the sudden change in her body, they advised her to use a hearing aid on her left ear and continue with her daily routine.
On her fifth year in college, she started experiencing severe headache, her blurry vision got worse, and she started acquiring a poor balance. After her graduation, she underwent cataract surgery to correct her vision. It went well as planned and her vision became somewhat clearer, but five months later, she started having difficulty in reading smaller fonts. We went to a neuro-opthalmologist who ordered Amey for to undergo MRI of the brain.
The results left us speechless. It showed multiple tumors and the most prominent was the one affecting the optic nerve. We don’t know where to start and what to do. In August, Amey was diagnosed with a NF2 condition. As a nurse, I started searching everything about NF2; its nature, causes, and all of the relevant information we should know. I also found the NFF Philippines and I got to meet other Filipinos with both NF1 and NF2. I met Kcat who seemed like an angel, always ready to help and enlighten us during our darkest days. She answered all the questions that were running in my mind and she introduced us to her neurosurgeon, Dr. Willy Lopez, who is now Amey’s doctor as well.
Dr. Lopez said that Amey is already legally blind and she can only see in full brightness. According to him, the surgery was a 60–40 percent chance – 60 percent chance that she will become blind due to the operation and only 40 percent success rate. Amey bravely agreed to undergo the operation. She said, ‘I’m willing to take all the risks and undergo surgery. It’s better to be blind due to the operation, than become blind without even trying.’
When the day of the surgery came, we were all anxious of what will happen. Fortunately, the surgery was a success! Her vision improved, but not quite since the optic nerve was damaged by the tumor. But still, she didn’t become blind!
Four months after, Amey underwent Stereotactic Radiosurgery (SRS) to scrap off the remaining tumor that touches the nerves. Everything went well and with the help of the doctors, Padre Pio and faith in the Lord, Amey recovered quickly.
Amey is a year older again and our wish for her is to continue her strong faith in God and to not worry about her condition because she is not taking this journey alone. We, her family and friends, are always here for her no matter what. We will always be here to make sure that everything will be alright.”
The more I get to know Shiela, the more I am able to say, “Me too!” We really have a lot of similarities and it leaves us amazed every time. Like Shiela, I was also misdiagnosed with polio in my younger years (my left arm is smaller than my right and my left leg is 1-inch smaller than my right, but 1 cm. longer). More than our similar interests, we both have a positive outlook in life, and a strong faith in God which helps us get by.