As of today, there is no cure for Neurofibromatosis. Just like a turtle, it is slow yet it’s moving and it will reach the finish line and discover a cure for it!
The colors of the turtle’s feet are represented by us; Nico is fuchsia, Marie is violet, Ashley is blue and Lyndon is red. We are four different individuals, but we are in ONE shell, fighting together.
My family and I are appealing to your good heart to help us in our time of dire need. I, my two brothers and sister, for reasons that defy medical explanation have all been diagnosed with a very rare genetic disease called Neurofibromatosis Type 2 (NF2). NF2 is characterized by the development of non-cancerous tumors 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. Depending on the location, the tumors can affect control, balance, speech, eye movements, facial sensations and most importantly, hearing. Although there is no cure for NF2, the tumors can be surgically removed to stop them from further affecting our health.
Currently, I (Ashley) have already lost my hearing on my left ear and my right ear has moderate hearing loss. It also affected my balance, which is the reason people constantly think of me as a clumsy person and there are times when I would feel very dizzy. My brother, Niccolo, after undergoing surgery has lost his hearing on his right ear and the same thing may also happen to his left ear. My sister Marie had to undergo an operation on her spinal column to prevent her from becoming paraplegic. Her left extremities were weakened as a result. Lyndon has already undergone surgery on his left ear and has lost his hearing there too.
In most cases, NF2 only occurs unilaterally. However, it may also occur bilaterally, which is what happened in our case. And though NF2 is transferred genetically, for four children of the same parents to all inherit the disease is unheard of. Our mother, from whose side we inherited NF2, had already passed away at the age of 27, two months after giving birth to my youngest brother, Lyndon. At the time of our mom’s death, our dad sunk into depression. He couldn’t work anymore. Last October 22, 2009, he passed away. We are under the care of our grandparents who have no financial means to meet the medical costs of the operations and MRI, which we have to undergo every six months.
And now, after seeing my latest MRI results, Dr. Chiong recommended for me to undergo surgery for the excision of the tumor and a cochlear implant. My grandmother asked to delay the operation because we don’t have enough funds yet. For this reason, we are appealing to you to donate broken and unrepairable appliances that are ready to be disposed of to us. My grandparents will collect the copper, aluminum and other in them and then sell it to junk shops to raise money for the treatments. The money will be deposited to our bank account.