Nicholas is my sweet, fun-loving younger cousin. I was there the day he was born, he was there as my ring boy the day I got married. He was born with a very rare condition. This affects the way he speaks, lives his day to day life, social life (as a 12 year old), and his emotional and phsycological well being. He requires numerous surgeries throughout his life until he stops growing. These surgeries, in addition to the travel costs, is growing, a LOT. ANY help, even a nickle, will help Nicholas recieve the prompt care that he requires. PLEASE HELP OUT...
This is what Nicholas' sister wrote on the day of his most recent surgery (August 17, 2016)....
I've always meant to write something about Nicholas' face but I get teary eyed when I've tried. He is scheduled for surgery today though so I figured I should give it another shot. If you've ever been curious about Nicholas's face but you didn't want to ask, this is for you:
Nicholas was born with a venous malformation. It's a rare type of vascular birthmark (very similar to hemangiomas but not as common). We generally consider birthmarks to be harmless but Nicholas's is vascular, meaning it involves his blood vessels. His in particular involves his veins. Basically his veins didn't form properly, and now his right cheek looks permanently bruised. He has an abnormal growth of tissue on the inside of his right cheek that makes it difficult for him to perform basic life skills, like eat or talk. If you were to ask him if it hurts, he'll probably say no but we'll never really know how much discomfort it causes him. This malformation grows with him as he grows and won't stop until he stops growing (probably when he's in his early twenties). It also swells whenever he cries or experiences trauma to the area (if he falls or gets hit on his face he could bleed to death). He'll need multiple procedures to debulk his malformation over the next decade. As with any procedure there are so many risks involved (not to mention how expensive the hospital bills end up being). His doctors that specialize in his particular congenital vascular anomaly are based in New York. Unfortunately, since we live in California, usually only my dad and him go (about every other year). It's absolutely terrifying every time he goes. I always wonder how different he'll look when he comes home.
Despite his birthmark (and the numerous surgeries and the countless doctors and the occasional bullying and the never ending stares), Nicholas is the sweetest and friendliest boy you will ever meet. I wish I could trade places with him so that he didn't have to experience any of this and it breaks my heart that I can't just make it go away.
I am so grateful for all the love and support from all of our friends and family. (And of course the doctors and nurses and hospital staff.) Thank you for every get well wish, hug, thought, and prayer. Thank you for trying to understand him when he talks. Thank you for treating him like any other 12 year old. Thank you for being there for my family. Thank you for being there for Nicholas.
I hope I've given you a better understanding of his condition and struggle. When Nicholas was in preschool he would cover his face or look away if you tried to take a picture of him. Now he rushes to be in pictures and is always ready with a smile. Even though he has a long way to go he's improved so much. He inspires me to be brave every day and now I hope he inspires you.
This is what Nicholas' sister wrote on the day of his most recent surgery (August 17, 2016)....
I've always meant to write something about Nicholas' face but I get teary eyed when I've tried. He is scheduled for surgery today though so I figured I should give it another shot. If you've ever been curious about Nicholas's face but you didn't want to ask, this is for you:
Nicholas was born with a venous malformation. It's a rare type of vascular birthmark (very similar to hemangiomas but not as common). We generally consider birthmarks to be harmless but Nicholas's is vascular, meaning it involves his blood vessels. His in particular involves his veins. Basically his veins didn't form properly, and now his right cheek looks permanently bruised. He has an abnormal growth of tissue on the inside of his right cheek that makes it difficult for him to perform basic life skills, like eat or talk. If you were to ask him if it hurts, he'll probably say no but we'll never really know how much discomfort it causes him. This malformation grows with him as he grows and won't stop until he stops growing (probably when he's in his early twenties). It also swells whenever he cries or experiences trauma to the area (if he falls or gets hit on his face he could bleed to death). He'll need multiple procedures to debulk his malformation over the next decade. As with any procedure there are so many risks involved (not to mention how expensive the hospital bills end up being). His doctors that specialize in his particular congenital vascular anomaly are based in New York. Unfortunately, since we live in California, usually only my dad and him go (about every other year). It's absolutely terrifying every time he goes. I always wonder how different he'll look when he comes home.
Despite his birthmark (and the numerous surgeries and the countless doctors and the occasional bullying and the never ending stares), Nicholas is the sweetest and friendliest boy you will ever meet. I wish I could trade places with him so that he didn't have to experience any of this and it breaks my heart that I can't just make it go away.
I am so grateful for all the love and support from all of our friends and family. (And of course the doctors and nurses and hospital staff.) Thank you for every get well wish, hug, thought, and prayer. Thank you for trying to understand him when he talks. Thank you for treating him like any other 12 year old. Thank you for being there for my family. Thank you for being there for Nicholas.
I hope I've given you a better understanding of his condition and struggle. When Nicholas was in preschool he would cover his face or look away if you tried to take a picture of him. Now he rushes to be in pictures and is always ready with a smile. Even though he has a long way to go he's improved so much. He inspires me to be brave every day and now I hope he inspires you.
Organizer
Michelle Concessao
Organizer
Pickering, ON