Nicole's Miracle Wish
Become Nicoles Friend, She loves new friends
Thanks for stopping by. I'd like to take a few minutes of your time to tell you a story, my story, and the story that is my life. My name is Nicole Pampena and I was born on November 8, 1994. Over the course of the last 228 months that have comprised my life, I have been hospitalized 157 times and found myself knocking on heaven's door on four separate occasions. This has been a way of life for me. I guess you could say that I really don't know any different. I am unable to stand, walk, or speak. If I were able to stand I would be 3.5 feet tall and weigh 49 pounds, this despite my 19 years of age. Never have I swallowed, drank, or tasted real food. I've never been able to go to McDonald's, have a coke, or taste an ice cream cone. Aside from being confined to a wheelchair, I am unable to close my mouth or swallow. Because of this, my mouth has to be suctioned once every 20 minutes to prevent me from choking or aspirating. I am fed through a tube that is inserted in my lower stomach, and I live on liquid. Unfortunately, I was born with Cerebral Dysgenesis, Chronic Collapse Of the Left Lung, Club Foot, Severe Kyphoscoliosis and Gastroesophageal Reflux Disease. Thankfully, I have an extraordinary team that takes care of me as I require around the clock nursing care, without which I would die. Before moving on I'd like to try something fun. I know this may seem silly, but I would like to ask you to play along with me. As you read my letter, I'd like for you to keep your mouth wide open without swallowing, and don't you dare cheat because I will know.
Despite the limitations I have, I try to fill my day with as many fun and encouraging things as I can do. I go to school and love engaging in extracurricular activities. I enjoy listening to music and am particularly fond of Taylor Swift, Bruno Mars, and Engelbert Humperdinck. I also love watching the kids on Halloween. Even though I can't go trick-or-treating, I still like to get dressed up and sit at the front door while mom hands out candy to kids. Me...I just sit and watch. Unfortunately, because I'm now 19 years old, the majority of activities I once had available to me, are no longer so. Things such as play weekends at Holland Bloorview Children's Hospital (a center located here in Toronto, Canada), are no longer an option because I am no longer "of age". I'm lucky though. Up until now, I have been able to live at home, and even the doctors say that part of my ability to beat the odds is due to all the special love and attention I get from being at home with my parents.
From the time of my birth I came into this world fighting, sentenced to death by my doctors, 1 year is all they gave me. That's it! Instead of looking ahead to the future, and going to college or getting married, my parents were told instead to look forward to sickness, hospitals, and funerals. Despite this, I refused to give up. Over the course of 157 hospital admissions, the doctors told my parents to prepare for my death on 4 separate occasions. 4 separate times my parents prepared themselves for my departure, and on 4 separate times I refused to give up and fought back death. Here I sit with you today, as I continue my fight.
That reminds me...I have a father! His name is Joseph and he is blind. Dad and I spend a lot of time together. We like to hang out, watch TV, and talk. He asks me questions and I shake my head with yes or no. You wouldn't believe the fun we have just hanging out on the sofa, just being close to one another. It's hard sometimes because there is so much I would like to say, but I can't no matter how hard I try. I wish I could speak to him, I wish he could hear my voice, and in turn, I wish he could see me. My dad went blind when he was 24 years old. He had a bad reaction to penicillin. Even though he's blind, I know in his dreams he sees me, and can hear my voice, and pictures me just the way I am, daddy's little girl. Sometimes there is a lot that can be understood without having to see or hear; we feel one another, and communicate on another level that doesn't require words. We have a special bond that comes from a place deep within, and a connection that is not dependent on words, or sight. I really love him, and I could not ask for a better father. He truly is my hero. I also have a mother. Her name is Paulette. She's a great mom, always there for me, trying to make me happy, and caring for me in my times of illness.
I guess this would be a great place to stop my story but I have more to tell. Unfortunately, my mom is sick. She has stage 4 cancer on her liver and is getting weaker, day by day, making it impossible for her to care for me the way she once did. Not only am I losing my mom, but I am also losing a very loving caregiver and a great friend. Mom doesn't know, but I sit and watch her from my wheelchair. I want to yell at her, to tell her to get up and fight, to not give up, to tell her that I need her to survive because without her everything will change. Mom's tumors are growing. The one on her liver has grown from 2cm to 7cm in only a few months. The cancer is also in her esophagus and lymph nodes. The doctors say it's only a matter of time, that mom won't make it until the end of this year, and so it is out of sheer desperation that I sit in my chair and will her to get better, will her to beat this cancer once and for all, despite the fact that death is knocking on our door once again. This time to try and get mommy.
That's why I'm writing. I really need your help. In order to stay at home, and get the life-sustaining care provided to me that I require, my family will need financial support. Without your support, I will not survive. I cannot imagine being someplace else, other than my home. I don't want to be separated from my family, and I can't live without specialized nursing care. Aside from financial support, we hope you can help out in whatever way you can. As I'm unable to write, speak, or talk, a friend of my fathers has taken the time to sit down and write this letter for me. We've spent a lot of time together and he asks me questions to which I reply yes or no. He's given me a voice to get my story out there. Please share my story through Facebook, e-mail and with your friends. The only thing this will cost you is a click of your mouse. We would also really appreciate any financial assistance you could give. I have a site on gofundme.com (Nicole's Miracle Wish) where you can donate and help me and my family. Hopefully, through your acts of kindness, I will be able to get the life-sustaining care I need and stay at home. Even though my father is blind, he's always taught me that it's ok to ask for help, just as long as you're willing to help others out in return. And I plan to do just that, help out other disabled people. I don't know what the future holds, or what fate has in store for my family, but I hope I can count on your support and who knows, maybe one Halloween night we may even just meet one another. Just look for me...I'll is the girl in the wheelchair dressed as an angel, sitting by the door with a smile in my eyes.
PS. You can close your mouth now :)
It costs approx. $190,000 a year in order to provide life-sustaining care for Nicole Pampena. This amount is over and above current government funding and takes into consideration mom's reduced ability to provide care. This includes:
* Nursing Care
* Medical Equipment
* Special clothing/footwear
* Hospital Visit Parking
* Wheelchair Accessible Van maintenance
* Wheelchair Elevator Lift repairs
Much love, happiness, joy, and gratefulness to you all,
- The Nicole Miracle Wish Team
Nicole's Miracle Wish Facebook fan page (don't forget to "Like" us):
Nicole's Facebook page (Nicole would love to be your friend):
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Secondary donations can be made at your local bank. Please reference Nicole's Miracle Wish
Transit #: 18722
Institution #: 004
Account #: 6418323