Got this from a friend:
I would like to draw your attention for a quick second to something that is near and dear to my heart – helping to end the long and cruel reign of NF 2 and to finally be set free from the menacing shackles of NF 2 that we are trapped in from the moment we are diagnosed with this wretched illness.
As you may know, I was diagnosed with Neurofibromatosis Type 2 at an early age. It is a genetic condition marked by various benign (and sometimes cancerous) tumors that grow on the nervous system, that includes the brain and the spine – two extremely important centers within our bodies for everyday functioning. To give you an idea of what we go through, let us start with a tumor that is inherently present within almost all who are diagnosed with NF 2; the tumor that grows on the hearing nerve. During our early 20s, we succumb to losing not just our hearing but our sense of balance coupled with suffering the consequences of facial paralysis (such as the inability to smile or worse yet, the inability to shut our eyes completely which leads to severe dry eyes. If not treated with eye lubricants on a daily basis, we may lose our vision as well because it’s very important that the corneas of our eyes stay lubricated).
For me personally, I have had a myriad of surgeries to remove these tumors since I was 9 years old. Each time, I had to climb my way out of that pit of despair. With each surgery, I lost a little piece of me forever. I was constantly barraged with teases as a child from my school peers. I even suffered the misfortune of having my spine compromised by an overly confident and unapologetic neurosurgeon. As a result, if it wasn’t for the miraculous hands of my orthopaedic surgeon in India, I would not be here right now. However, I have clung on very tightly over the years to the adage which I have come to respect, that is that “there is always a way to survive what seems insurvivable”.
I learned to look at NF in a different light. It taught me many things, things which some people will never learn, never come full circle with, no matter how brittle their bones get! I learned at a very early age who was my friend and who was not, I learned to prioritize the important things in life, I learned to be comfortable in my own skin, I learned not to waste time on what seems frivolous as time on earth is very short, I learned never to take life for granted, I learned that Faith is not the belief that God will do what I want but instead the belief that God will do what is right for me. When I look at my reflection in the mirror and see all the bumps and scars on my body, I no longer stare at them in anguish but rather, every bump and every scar on my body is a reminder that I have fought a long and hard battle with NF 2 – and I have won. I even found a man who could care less about the “flaws” on my body, a man who would never leave my side no matter what happens to me, I realize how rare that is and indeed I am grateful that God had such a person in mind in His plans for me.
May it be known that NF is commonly mistaken as a “rare genetic disorder”. NF is THE MOST COMMON GENETIC CONDITION, more common than cystic fibrosis, duchenne muscular dystrophy and Huntington’s disease combined. How many times have you heard about these conditions on TV, in the newspaper?
Thankfully, the scientific and medical community has evolved and is making rapid progress to finding a prevention or a cure for NF. For instance, I am participating in a study in America where a team of researchers study the progress of NF in many people across the spectrum in the hopes of understanding Neurofibromatosis a little better. I had the previlege of meeting the head researcher, Dr. Ashok Asthagiri. I think he is a remarkable human being, at just 35, he has devoted his entire career to understanding the effects of this deadly disease. I have never met a more down-to-earth neurosurgeon, his ability to empathize and connect with all his patients is very much a rare trait found in doctors today.
Anyway, on to the point of my letter, I certainly hope you are still reading by the way. There are many of us who are fighting hard for a cure for NF and I had the honor of meeting a woman who climbed Mt. Kilamanjaro and made a movie out of it in the hopes of raising funds for research and spreading awareness despite being burdened with all the disabilities that NF 2 brings. Rebecca did not reach the summit of Mt. Kilamanjaro, but as I have said many times to many people that she has indeed accomplished the very summit of her purpose. How many abled-bodied people have done what she has? I am awe-struck and inspired to know someone as brave as she is, she suffered through Non-Hodgkins Lymphoma, multiple brain surgeries and a spine surgery as a result of NF 2 but as you can see, she has unwaivering strength. Let us not forget the many others who have it much worse than Rebecca, but are weathering each storm as it comes.
As such, I humbly request that you visit http://helpstopnf2.org/ and kindly make a donation to Help Stop NF2. Please remember that NF 1 occurs in 1 : 3000 births…..1 : 3000 births. NF 2 in 1 : 25,000 births…These are jarring statistics and please let these facts slowly sink in. I may not see the cure in my lifetime, but I cannot bear to see another child endure this hardship. I have even made the decision to forego the experience of motherhood, if it means I can spare my child of this deadly illness. Please make a donation, even if it is a small one as many small ones can go a long way.
Please remember, your child may be next.
Thank you very much for all your help.
Keisha Somasundram Petrus