I just heard of Nicholas's passing and I am so saddened to hear of it. 
I remember being in Elementary School with Nicholas and I would stay in at Lunch with him everyday and we would play Connect 4 in front of the office. He was always the nicest kid who always had a smile on his face and never had anything negative to say.

I went to elementary school with Nicky. We were in the same class. I remember his one on one aide who always helped out. I remember how kind he was even when kids would be so cruel. I remember staying in at recess to talk to him about how his birthday was 11/25/1996 and mine 11/26/1996. 

He was always so smiley and always helped me with my math (I sucked at it). It was my first experience ever in life with someone who had medical complexities. He was patient in explaining his condition to me and never made me feel stupid for asking questions. 

I am just now finding out he has passed and I wish I would have stayed in contact throughout the years. 
Rest easy Nicky 🫶🏼

So saddened for your loss of this remarkable young man. His story has inspired me to help raise awareness of this awful unkind disease. 

Hiya
My name is jacqueline Holmes, I live in  the UK I was just watching a rerun of a show I watched in the past. It is called Body Bizarre. Nicolas' story touched my heart, I felt I had to see how he had come with treatments. When I put in his name sadly his obituary came up.  I am truely sorry for your loss. He came across as a wonderful young man who was willing to suffer even more pain just to help others. He leaves behing wonderful memories, even to strangers like myself. I wish all your family a lifelong full of wonderful memories and happiness that even after his sad passing puts a smile in our hearts. My heart goes out to you all.
Wishing you peace and happiness.

I just learned of Nicky's death. I am so sorry. My heart breaks for your whole family. You are all in my prayers.

May you Rest In Peace as you are now healed of pain. In the arms of our Savior. I saw your story just recently and was heartbroken to see the news of your passing, a beautiful smile, eyes and soul.  My deepest condolences to the family and friends. May God Bless you always.
❤️

Hello Nicholas i may not know you but i found out about your story and read about how strong, brave and courageous you are.A lot of people could learn from you and wish they did. I know your in a better place now your in no more pain and your free to live with Jesus. I pray for you and your family in theses times. Amen.

You were truly an inspiring and courageous young man, and I hope you’re pain free and racing Mario Karts in Heaven with your brother Alex; all while keeping an arm around your amazing mother until you all meet again! May you Rest In Peace sweet Nicky...you deserve it more than anybody I’ve ever known! 

God bless you and your family. Nicky thought me to live in the moment and be grateful even when things are though. I’m so sorry for your loss and can’t fathom the sorrow your heart feels. God bless. 

You were here and now you are gone.  I never knew you personally, only bits and pieces of your life through what was shared by your beautiful mother.  But even so...you have impacted my life.  I have tried to imagine what it must be like day to day, minute by minute to be in you and your family’s world.  I am sure I could never really begin to understand what you all went through, as you battled an unimaginable disease.  But even in the darkest hours I know that love carried you through.  The love for each other and the special bond between a mother and son, a son and father, brothers...family!    Thank you for being so brave.  For living your life openly and sharing with others so that awareness might be spread.  Thank you for touching so many lives…when perhaps all you wanted to do was just be an ordinary boy.  You had a special purpose in this life and your suffering was not in vain.  You are free now and I know you watch over those who also suffered with you…those who loved you the most.  But now they will carry on your name and remember the best of times, the joy and all the special memories shared inside the walls of your home.  Rest in peace, sweet, Nicky, and thank you for teaching this mom of two boys, to never stop fighting!  XOXO

Que le paradis soit ta maison et que Dieu soit avec toi ,chère Nicky

"Give me your hands and 
I'll hold them when you're scared
I'll warm them up when you're cold 
I will stroke them when you are sad (or in pain)
And I'll let go of them when you want to be free!"
(unknown author)

All my love goes to you, dear Nicky and to you beloved family.
Thank you so much for YOU and that I got the honor to get to know you on instagram and got the pleasure to feel your heart and your strength. 
You put the focus on what really counts in life. Your braveness is endlessly.
I adore you and I will never forget you. 
Fly with the Angles, dear Nicky 💫

Warm embrasses to your best family on earth.

Monika from Germany

Rest well sweet angel. I don’t know you personally but seeing your smile and thrive on Instagram made me push. I hope you’re dancing in the sky sweet baby.🥰😘🥰 Rest Well.

Sweet Nicky ,
Your Journey here is done you served well with Bravery , Strength , Courage and Love.  Rest well now. I am sure your Halo shines so very bright! Your inspiration and your story will shine beight here in all that you touched and loved! 
Dear Sweet Silvia, 
Sending Lots of Love and Continued Prayers for you for Peace and Comfort from one EB Butterfly Mother to another  you have did an Amazing job and should be very proud of the work you and Nicky have done to bring  EB awarness to others and find a cure.
My Heart goes out to you. 
Much Love to you and your Family!
RDEB Butterfly Mother Terri Ann Boone from Ky🙏🦋💕

Nicky and Silvia has been part of our life since the year 2002 when my son Diego was born with EB. I have never met them in person but they have helped me in so many ways with their stories and advice. Nicky was a warrior. I know our kids do not want to be heroes  and warriors. They want to live without pain and so many other limitations. But Nicky was a warrior as well as Silvia. I am thankful for being able to follow their stories. 
My prayers are with you. 
Nicky, Rest in Peace. 
Valentina and Diego

The Boys  ready for prom at Camp Wonder.
I am glad  to know there were so many beautiful, fun moments in Nicky's life despite the pain. He was  a wonderful, kind person and we owe him so much for being willing to share his life so openly to help others. Sending all my love to  the whole family on this hard day of his services. I hope the  huge outpouring of love helps you all through and the beautiful memories of Nicky keep you going.


I just only recently started following you all and even in that short time, the love, devotion, compassion and empathy displaced by you, your son and family is totally admirable.  My little brother died of a rare disease too way back in 1995 and being able to understand this journey through your eyes and Nicky's, it's brought me a sense of peace to know that even though you all had many struggles as well, you all kept up the fight and kept searching and searching for cures, etc., for all children affected by this disease.  I will continue to follow you and keep Nicky safe in my heart - he will always continue to inspire me as well as you - love and prayers headed your way

Unfortunately I was not blessed to have met Nicky personally, but it feels as though I did. The first time I heard of him was when he went to the hospital for the last time; another social media page was asking for prayers for him. From there I followed the link to his mother’s social media page, where I spent the next few hours going through his struggle and life story. I haven’t encountered as much bravery in anyone I’ve met in my life as I saw in Nicky and his mother. I saw countless testimonies of the people his story had touched personally. I was amazed at his resilience; to be in so much pain but make so much out of life.

I cried bitterly when news reached me of his passing, as though he were a dear friend of mine. I knew in that moment that the world had lost a truly great soul, and that such a great soul would be sorely missed. Seeing pictures of Nicky with his cats got to me especially; those are such pure pictures of love. To be able to emanate such unconditional love to everyone around him is truly a special sign.

Though we may all rightfully grieve over dear Nicky’s passing, we need not. In his 25 year life, he accomplished more than several lives put together. Fyodor Dostoevsky, perhaps the greatest author the world has ever known, believed that the ultimate purpose of life is to spread a feeling of fraternity throughout the world; to show to everyone such a display of Christlike love that the character of the world will slowly change. I firmly believe that Nicky was able to accomplish this as much as any Saint, part of why I grieve so deeply at his passing.

Nicky has genuinely changed the way I look at the world, and helped to restore my faith in humanity. I hope the knowledge that Nicky was able to change the lives of so many, including strangers like me, will help to alleviate the pain in his loved ones. I pray I can live such a life that I’ll be worthy to meet him in Heaven.

I don't think I've ever been this devastated about the loss of someone whom I've never met before. It really shows me, along with all these beautiful messages, just how loved and how special Nicky was and still is. 
I am glad I am not the only one who fell in love with Nicky's smile and his courage to keep going on in life. 
He will never be forgotten, his legacy will live on. 
When he was alive, he was my idol, someone I looked up to when I was dealing with my own health issues. Now, he's my motivation. I want to keep going and not give up until the end. I want to live life with dreams and aspirations and hope, just as Nicky has. 
Everyone has a reason to be here on earth and I can see why Nicky was here. He was here to guide all of us to a place where we can still be content with what we have, to believe in a better future and to always fight until the end. 
Dear Nicky, thank you for everything, now it's your turn to finally relax and to live pain free. 
I'll never forget you. 
Sylvia, you brought up a formidable young man. He followed your footsteps in to becoming this strong, optimistic person. 
I wish you all the best, because you deserve the world.

Much love 
I'll always pray for you all ❤

Nicky, we never met physically but seeing your journey through Instagram has made me feel like I've known you my whole life. I will miss seeing your beautiful smile, the kindness in your eyes and the depth of your soul. Love, prayers and blessings to your beautiful family, Mum, Dad, Connor and extended  relatives, and those close to you. 
Rest in peace Nicky.

Matt Trudgeon, New Zealand 

Nicky you touched my life so very much and we never even had to meet physically. You reminded me about selflessness, unconditional love and true courage after losing my sister at 25 to several unfair physical ailments. You gave me a tiny part of myself back that I lost when she made her transition. I was selfish and wanted her back even though I knew she would suffer if she came back. Then God sent me your mom on IG. You both opened my eyes again! Made me remember that I cannot wallow and disappear in self-pity, my sister Summer would have been so disappointed after all she had endured in life. You both made me remember the most important thing to her in life…..kindness, laughter, art, music, family, love, and most importantly, you both reminded me that my purpose is not over when someone who is so much a part of who I am passed. Just the opposite. We continue their legacy. I will always talk about my sweet friend Nicky  and how he gave me a tiny piece of my heart back , and his mother Sylvia who taught me to toughen back up because there are still people here who need me to appreciate every single ability and opportunity to continue the legacy of those who have touched my heart and life! I cannot wait to be united with you both Nicky and Summer! Until then, Summy you go show him the ropes and tell him to just enjoy his pain free weightlessness and soar! Also, Lord, please allow Nicky to send his parents just a few little signs…..nothing fancy just enough to reassure their heavy hearts that you are with him again. Until they meet you and are reunited with their angel boys, please put your beautiful hand on their hearts.Amen

 Not goodbye…..but…….I’ll be seein ya :)

I have followed Nicky’s journey for the last few months. Seeing him so positive and always smiling while being in constant pain was extremely inspiring to me. I can truly say that following his journey gave me a greater appreciation for life. Thanks Nicky, I’m glad you’re finally out of pain!

I'll never forget your shining smile and golden heart, rest easy Mr Nicky  x

Querido Nicky, aunque no tuve la oportunidad de conocerte en persona, pero te veía en las páginas de Facebook. Comparto con los demás la opinión de admirar tu fortaleza y ganas de afrontar la enfermedad de Epidermólisis bullosa. Nunca, dejaste que la enfermedad te quitará una linda sonrisa cuando publicabas tus fotos. Te prometo, que cuando llegue a ser Médico en mi país Perú, brindaré toda la ayuda sanitaria y humana para todos los pacientes con EB de modo que no pasen lo que tú tuviste que soportar. Descansa en paz e intercede por mí ante nuestro Dios todopoderoso para que pueda cumplir lo que te estoy prometiendo. 


Nicky, you were a warrior as was your mom and brother. I have loved you Since the first time I saw you on Facebook. You were so strong and brave and I will miss seeing you. To your mom and brother and family, I am so sorry for this huge loss. Forever in my prayers

Nicky, I will always remember your smile.  Thank you for allowing us to see into your daily life and educating us about EB. Peace, brother. I hope there are video games in heaven. 

Just like the The Butterfly Effect in the Chaos Theory which states that "something as small as the flutter of a butterfly's wing can ultimately cause a typhoon half away round the world", your life caused a storm of hope, resilience and bravery for thousands of families with EB around the whole world. Your short, but meaningful life had such a great purpose, you inspired so many other lives and made us all better persons.

You suffered more than any person can suffer, you fought more battles than any hero can fight, but you and your family continued to hope and smile despite everything.

Fly high, brave butterfly in a world without pain and suffering! You will always be remembered and continue to inspire us from wherever your wings will carry you!

For your mum and family, I hope they can find peace and comfort knowing that you will always live in the memory of the people whose life you inspired.

Rest in peace...

Thank you Niky for the teaching you have given with your love of life. ❤️

Nicky was such an inspiration to so many. In spite of the suffering he endured he always remained positive and had a smile that could brighten the darkest days. May our Lord hold you in his arms. Rest peacefully sweet Nicky.

I never met Nicky in person, but felt like I knew him from following him and his mom on social media.  They were one of the 1st people to welcome me to the EB community on Facebook.  

Hola, mi nombre es Macarena, soy de Argentina. 
Acompañó a la familia en este difícil momento.
Aunque sea de otro país, y seguía su caso por Instagram, aprendí mucho de Nicky y me quedan recuerdos muy lindos de su sonrisa y lo luchador que fue por sobre todas las cosas. Espero que donde sea que este, nos ilumine a todos y nos haga mejores personas dia a dia.

We will never forget you - fly high Nicky!

Nicky it was a joy to watch you grow and a privilege to be your friend. Your happy disposition in life was a blessing to all of those around you. You and your mom have changed the world for so many people. You have defied the odds during your quarter century on Earth. Rest now my butterfly, your work is done. Enjoy heaven and I promise all of us will watch out for your mom and family. We love you and will miss you greatly. Mama Duck/Jen

I never got the pleasure of meeting Nicky but have been following his life's journey since 2011. This was the year my granddaughter was born with RDEB.  I know 1st hand the pain endured. NICKY was a brave and courageous young man. His strength shows how loved he was. Fly high Nicky. God bless this family.

Oh Nicky, you will  be greatly  missed. 
You were a Hero not just to those with EB but to able bodied people.  You taught so many of us how to keep on  Persevering no matter what the  Obstacle in front of us.  You taught us to enjoy life and our family  even when things got tough. You taught us that it is OK to cry , that it doesn't  make us less but makes us human. You helped us learn to reach out to others when we needed a hand to hold.
You will forever  be in our hearts and minds.
Rest in Peace , free of pain and filled with Love ❤ 


I’ve only been following you through Instagram for a few months. But what an amazing strong young man you were. Your smile was a joy to see, especially knowing how much you had overcome. You and your family were truly blessed to have one another. I hope that you are now comfortable and that your family can take comfort from that. Rest peacefully. With love and sympathy to all Nicky’s family xx

Dear Nicky, 
I never got to meet you and only briefly followed your journey on social media but I thought of you. 
You seemed like a sweet and wonderful soul. Someone I know who will be missed. 
I know my heart broke for you and your family when I heard of your passing. My prayers and thoughts were with you and will continue to be. 
I know you are pain free now. Rest easy. 
All my love 
Katie xo

You’ll never be forgotten 

To Nicky and his family,
I cannot even begin to imagine the pain you are experiencing after Nicky's death. I cannot imagine what suffering you are fighting through. Nicky was such a beautiful soul. His life was a blessing to this earth. I never had the luxury of meeting or knowing Nicky but it doesn't take that to know just how special he was, how loved he was. 
All I can think about when Nicky comes into my head are his eyes. He had the most beautiful eyes, filled with so much life and positivity even despite all the pain he must have felt due to EB. To have to now adjust to a life without him, without those eyes, must be so overbearing and difficult to even think about. I wish you, his beloved family and friends, as much good luck, joy and peace as you can have in the future, as hard as this may be for you in this time. My heart goes out to you, and I will keep you in my thoughts for every day that passes.

Rest easy, Nicky. Thank you for making such an impact on so many thousands of people all across the world, and for teaching us so much about life and what we are capable of, even despite the things that try to hold us back. You were an inspiration and a hero, and your loss has left an impact on so many thousands of people. Because that's how special you were. And how loved you were, too.

Nicky

it's hard to believe that You passed away. You passed away to better place without any pain and suffering. You whole life, life which was full of pain and suffering you passed with precious and beautiful smile on Your face. Smile that will never be forgotten and smile that makes many many people on earht smiles too. 

Your words "Keep smiling, it's the best you can do for others" shud be the sign for eweryone for every each day in their life and everyone on earth should know this words.

Nicky You're trully hero, extra brave and storng. And now You are a beautiful angel with strong wings to cover your family on their earth journey.


I feel like I have lost someone close, a family member. But I'm only a social media follower like many.

Rest in peace Nicky, You was Great Men and world without You will be not the same anymore. 

Thank You to letting me meet You - Maciek from Poland (in Europe)

I’ve been following Nicky for 9 years on Facebook but sadly I never had the pleasure of meeting him.  I  was amazed by his bravery, he was always smiling, even though he must have been in constant pain.  I will miss him and I’d like to thank him and his beautiful family for educating me about EB and allowing me to have a glimpse into Nicky’s life, it’s been an honour and a privilege.
Sleep Well Nicky,  I’ll never forget you.  X

Nicky has left a legacy for the EB community. I pray that his soul finds peace and is in loving company of God.

Weep not. There is work to do. I am sorry for your loss.
-Sergio

Hi Nicky,

I am an Instagram user who happened to come across Sylvia's profile a few weeks ago. I was mesmerized by your fight. It must have been very difficult, but you were exceptional. You were a beautiful soul, a beautiful son/brother/grandson/friend. It would have been very nice if I could have become your friend. I am so sad, but at the same time, I am relieved that you are now pain-free and in peace. You will be missed.

Hi Nicky's family, 

It must also have been very difficult for you. You are all very brave, and I wish you the best. I'm thinking about you. Sending a lot of love.

My deepest sympathies for your loss. Nicky was all smiles in every moment you shared of his time here on Earth. He was and will continue to be a true inspiration of courage and love. I hope you take some comfort in knowing you do not mourn the loss of Nicky  alone. Nicky touched so many lives from all over the world, and will be missed by so many.

Again, my deepest sympathies.
Kevin
New York City

My deepest condolences to Nicky's family. 
Nicky's smile lit up the whole world even when he was in so much pain. A true inspiration and an everlasting symbol of strength. I will never stop admiring him.
Sending lots of love.

My deepest and heartfelt condolences. Nicky was an inspiration to myself and so many. His smile was brighter than the sun - even on days when he was fighting through the worst of EB. God has called his sweet Angel Nicky home to Heaven and I know he’s there smiling down on your family. 

I'm thankful to have come to know  Nicky. We've never met, but you have become a positive influence in my life. Seeing your strength, kindness, and positive character has made me strive to be a better person.

I thank God for bringing you into my life as a positive influence.  You have been a positive influence on so many people. I am very thankful to you and your family. 

I believe there are people who are put on Earth to be positive guides for others. I believe you were one of them Nicky. 

I will always remember you and if I ever have a son of my own, I'll name him after you. I'll be sure to tell him about you. 

Forever in Heaven and our hearts.

My heart aches for Nicky's family and friends on his very sad passing, rest in peace beautiful boy. Forever young 💕💔💕

Sending love and thoughts from Ireland 💚💚💚💚

Nicky I miss you so much! ❤ Even though we never met, it feels like I always knew you. Your warm, gentle, and grateful gaze melted my heart. No one has ever made such a big impact on me, you are always in my heart. ❤🦋You were a unique angel sent by God to earth. 🕊 Mother and the whole family, you are not alone with this great loss. The whole universe misses Nicky. 🕊🌠

Longing, 
Kristiina from Finland

Rest in peace God has gain another angel



Rest in peace Nicky 🙏🏻

You were such a warrior and taught a lot to everyone who knew about your story through instagram. 

Love from Brazil ❤️

Nicki was such an inspiration, he will be deeply missed by so many.  My condolences to all who love him.

I Never knew you and when Markys mum shared your page asking for prayers i gave them in my way.  You are loved even briefly from Glasgow in Scotland, UK. All my love to your family and kisses from my lil brain damaged cat Zhu (cerebellar hypoplasia) and my dog Nala xo

we love you and pray for a cure xo

forever in my heart

La muerte de un ser querido no siempre es el final mientras exista memoria para recordarlo.
Todo un ejemplo de valentía y coraje a lo largo de su difícil vida.
Descanse en paz.
Te recordaremos siempre.

Gli occhi allegri di Nick resteranno sempre nel mio cuore. Vola alto, ragazzo! Con affetto, un abbraccio dell'Italia a tutti voi. Isabella 

Nicky was a special soul, a light being who chose to come to Earth and be an angel, a light of pure love and goodness and an inspiration to those who ever met him. Through his presence on earth he not only inspired and helped expand his own soul but touched his family and loved ones in such a special way that he helped them with their expansion too.  Thank you Nicky being a part of my journey and for showing me what real courage and bravery looks like. See you later sweetheart . 

Although we never met, I got to know you Nicky thru all of your Mom's posts on FB about your journey with EB!  I'm so very sorry you had to go thru all that pain all of your life! You had the Best Mom a boy could ever ask for and I know you knew that too! The only comfort now is knowing you are no longer in pain.... God Bless your entire family and friends!  Silvia and family, I am so very sorry for your loss! My heart breaks for you! God Bless you all! 

Thank you Nicky, for being a true hero, not just to me, but for so many others.  You showed us how to live life to the fullest and to appreciate the loves around us.  Your smile would always brighten up my day and I will truly miss you.  Thank you for being apart of our lives.

Sylvia,

Thank you for allowing the world to peer into the struggles you and Nikki had with this terrible disease.  You allowed strangers to see your pain but at the same time you showed us what the meaning of TRUE GRACE is.  You are one of the strongest and most tenacious women I have ever known.  

I am truly sorry for your loss.  
You and your family are in our prayers.

Bill Holbert

Nicky I have a daughter born with EB so I kinda know what you been through. Although I didn't get to raise her I have kept up.with you since her birth in 2004 on DEBRA WEBSITE. I pray for your family through this difficult  time. You are no longer in pain rip nicky

I followed Nicky's journey a few months ago, and I was so sad when i found out about your passing. 
You were truly a hero and  I wish nothing but the best for your family and that you rest in peace with god and angels. 
✨Fly high Nicky ✨

Florencia - Argentina.

Nicky,

You were and always will be my hero. Your loving, kind and beautiful personality you shed others in the midst of your pain showed true character. When a cure is found, you will be remembered as someone who fought the fight to help change the world. I feel so blessed to have known your story and the beautiful Angel you were, along with your incredible mother. Your legacy will afford you eternity. I love you and you’re in my heart forever.

Love,

Sascha 

I first saw Nicky on the news on a cold California morning before school when I was 14. That was the first time I learned about EB, and I was so moved by Nicky personally because we seemed to have a lot in common. My name is Nikki, we liked a lot of the same video games, my family is Italian, I wanted to be a chef for most of my childhood, and we were only a year apart in age. To think of all of this and yet know that our experiences in the world could not be more different because of an incurable and severely painful condition was something that broke my heart, yet Nicky was brave, courageous, hopeful, and so positive. Since that day nearly 10 years ago, I have been inspired by Nicky and his mother Silvia, and have kept up with your story and it’s ups and downs. Now I am a medical student, and both Nicky and Silvia have influenced my perspective on providing care, and EB has now inspired many of my research projects. Moreover, in my personal life Nicky’s positivity and bravery is something I recall whenever I feel broken down, and it reminds me that rare and beautiful light can be found in the darkest places. It is painful that someone who has been an inspiration to myself and so many others is no longer with us, but Nicky fought hard for a long time time, and in the ending of his pain he will continue to inspire me for the rest of my life. I wish I could have met him in person, or at least played some video games with him, but even still I feel like Nicky is a big part of my life because of all of the ways he continues to inspire me. Blessings to him, his mother Silvia, his Brothers Zak and Alex, and his family.

Fly high Nicky, we will never forget you.
Giulia

Nicky stole my heart …  I will always remember him as being so brave, so loving and sweet though I know he lived in constant agony.  I love you Nicky and I’m so happy for you to have flown off with the angels.  No greater place exists than the place awaiting this beautiful soul called Nicky.  
Fly high Nicky .. You are greatly loved.  ♥️🙏♥️

Gracias por tu luz y trabajo hecho aquí en la Tierra. 
Bienvenido a casa 💖

So many memories of a young man I never met. So much awe for a mother who worked tirelessly to give her son the best life possible. I'll miss pictures of Nicky cuddling his cats. I'll miss seeing those blues eyes that always sparkled, sometimes through laughter and sometimes through tears.  I promise to never forget you, Nicky.

I alway’s will think that Nicky is a great fighter love and caring but most of all his courage and strenght to go his way in Life 

I met Nichy through post posted by Ms. Silvio. Ifell in love with that brave young man and an even braver mothe. He radiated positivity as the brightst star. I will remember his wonderful smile and look full  of love and kindness. I send my love to Sylvia and her family in these difficult times. 

I had the wonderful pleasure of being Nicky's camp counselor at Camp Wonder for a couple years. I will never forget his smile and laugh and how he always had such a positive attitude. He taught me so much about how to live life to the fullest. I will greatly miss him. Sending love to Silva and family in this time of grief. 

I follow  Silvia on social media, Nicky touched me the instant I followed his story, I was going through a bad time in my life and he gave me the strength to see positively, ever since then my life has turned around, I never met Nicky in person but just knowing of his life
Touched me, and I feel grateful that I had the chance to get to know him. A true warrior, my hero, you will always have a place in my heart Nicky, now is the
Time for your big brother to finally get to be with his baby brother, you touched us all here on earth, and now it’s time for heaven to have your magic, thank you Nicky, thank you for saving me and thank you for sharing you’re story, I hope you finally get to be a chef now, enjoy your pain free life you will always be here with us. Rest in peace champ xx all my love Silvia and Nicky’s family xx 

Love kelci x 

Rest in peace Nicky

You were a true inspiration to all. I have followed your story for many years. You will always be in our thoughts and hearts.

Dani, UK 

I started following nick a couple of years ago after it was brung to my attention about this terrible terrible disease, but despite of the condition nick had it was definetly overshadowed by his beautiful smile, I truly believe angels are sent to earth and nick was one of them he spread so much awareness in his 25 years of life and I'm truly honoured that I lived in the same life time as your son, I live in Birmingham England and I promise you I'll never ever forget nicky he truly has made a massive impact on my life, my daughter asked me what was wrong with nick and after I had explained to her what his condition was she replied doesn't he have beautiful happy eyes, my daughter is now 7 but at the time she was around 5. Nicky you truly are going to be missed thank you for sharing your life with us all from your friend across the pond lauren xxxxx

Dear family,

You don't know me, but I would like to leave a message.
I discovered your Instagram page two weeks ago and started following Nicky's journey.
I'm so sad to see he passed away and I'm so sorry for your loss.
I wish you lots of strength and love.

Sabrina (The Netherlands)

Nicky is my hero! 
I started following Nicky a few years ago... i saw the pain, and everything he was going through... but i also saw the glow and thoughness in his eyes!  

Everytime he came up in my flow... my heart broke, and all my "problems" disappeared... noone should go through what he went through! Nicky is a hero! He showed and learned me what is important in life, and that you should be greatful to what you have! Nicky will always be in my heart. 
He has done a great impact in my life, and i will give these things forward to my family and friends. 
Even though Nicky had to struggle in life he is and was a blessing for this world!  A real fighter!  Thanks for everything Nicky! ❤

Markus / sweden

I remember you, because you were a beautiful unique child, i came to follow through your mum Silvia  when i was little too! I had a hard day when your fight, your strenght had to go to a new place, heaven! You never left us, but your body did, i am deeply sorry for not being able keep follow your journey, when i wrote you were special, i mean it in a beautiful way, you touched peoples soul and heart in a way many can't, i really wanted to meet you and your beautiful mom for years! Never stop inspire us, i see you in heaven now, free from pain, looking at your mum who did everything to give you the best years! You are smiling saying, your not in pain anymore but miss her like crazy! You will meet again, but first she will live by for the both of you! Rest in peace from Rebecca 🙏💔👼

Nicky was such a bright young man. A hero, warrior and a great inspiration to others.  He will be shining his light on us from above, as the heaven has an extra star right now. 

Butterfly wings. 

On butterfly wings you Flutter
Above this earthly plain, 
Your strength and purity is heavens precious gain.
From a body used to suffering, your soul is now set free.
Behind is left precious memories and a long lasting legacy.

🦋

Rest in Peace, Nicky

The unfathomable strength you displayed in life is an inspiration to so many, and your outstanding courage will resound and echo in more lives than you could ever know. In sharing your struggle with the world, whether it was through social media, the news, or documentaries, you and your mother showed us such a tremendous level of determination that I daresay we all witnessed the peak of human spirit. Although I never had the honor of meeting you in life, I count myself so tremendously lucky to have your example, and say with the utmost certainty that the world is better for having had you in it.

To Nicky's parents, his family, and all his loved ones, I wish you all peace and send much love in this time of unimaginable grief. To Nicky's mother, Silvia, you showed such indomitability in supporting your son in his struggle, and I hope you may find some comfort in knowing you were the greatest mother you could be for your boy. As you all confront the pain of Nicky's departure from this world, I pray that you may eventually find happiness in the knowledge that one day you will be reunited in the next 🕊

I did not no you personally I had just started following your journey on instagram. It breaks my heart to hear that you have passed. Rest In Peace and good bless you and your family.

Rest in peace you have earned your wings now fly high sweet boy.💔💞💕


Je suivais depuis quelques temps déjà l’histoire de Nicky sur Facebook.
C’était un garçon tellement courageux ,je ne sais pas comment il a pu avoir autant de force…..c’est un ange à présent..il sera toujours à vos côtés….
Caroline 

Nicki I didn't personally know you but I have been following your journey on Instagram for along time. You were a beautiful young man, you changed the lives of so many of us followers, you are and were a true inspiration. 
Thank you for being you , sending love to your family from little New Zealand x

I first saw Nicky's story on an episode of Body Bizarre. I work as a medical secretary and when I wrote my first chart on a child with EB I immediately recognized the condition and remembered Nicky. 

Just this Saturday I happened to watch a rerun of that episode of BB with my mother. She was deeply affected by Nicky's story, as was I. I felt compelled to find out where Nicky is today, found Silvia's instagram and felt my heart break as I learned he might have a week left. And when I checked on Sunday he was gone. 

I am deeply sorry for the family's loss, and truly saddened by the US healthcare system. I live in Sweden, where no-one ever runs the risk of financial ruin due to medical bills. Donated towards Nicky's funeral, as it felt like the least I could do. Rest easy, Nicky.

I didn't know you personally but I had the chance to chat with your mum a couple of times and your strenght always put light on my path.
I wish you peace and love.

Nicky I  was following you for so long on facebook. I was so so sad when I found out about your loss. I really cried . I was watching you suffering from this awful disease but you never lost your beautiful smile. You were so brave and so your wonderful mum who stood like a rock beside you. May you rest in peace with God and angels brave man.

dear boy, my name is Silvia, I am 37 years old and I have cancer in the fourth stage. every day I came to you and you showed great strength and patience and this gave me the strength to face even my illness. in you I found an example of love, courage, perseverance, resilience. How am I going to do it now without you? let's do this ... I bring out all the courage I have but you promise to welcome me when my time comes. a hug to mom Silvia the pain takes your breath away .. be strong.

Nicky was a very brave young man Who done his very best to enjoy his life He suffered a great deal but the way he coped was wonderful He and his mum had a wonderful relationship and so many times you could see how she wanted to take his suffering from him    Nicky now has been released from the pain he suffered and is awaiting the resurrection to a perfect life in the new world.           Rev 21 : 3-4.  God has promised this  and he is a God who cannot lie Titus 1 : 2  🌻🐝    

I have followed Nicky’s life for some years on Facebook and as a mother to another brave young man with RDEB I have rejoiced in the bravery and zest for life exhibited by this wonderful young man. Nicky’s smile and his evident enjoyment of his life, his cats, his family were a testament to his positive choice to embrace the life he had. His eyes showed the pain he endured but his smile lit up his face. He is free now of pain and I pray for you, Sylvia and your family and all of those who knew Nicky in person to take comfort in having enabled him to enjoy the best in his life. His bravery touched us all and your love and determination to fight for him is a shining example of a mother who never ever gave up. My love to all of you.

Nicky, although a lot of us don’t personally know you, we’ve grown to know you and love you via social media...and I can’t even begin to put into words what you have taught me and so many others about life and about EB as well! I hope you’re kicking some Mario butt up there in heaven and that you’re finally pain free! Rest In Peace buddy, you deserve it more than anybody I’ve ever known! To his parents, I am so very sorry for your loss but couldn’t be more thankful for you sharing your son’s story so openly on social media...Nicky has always been a daily inspiration to me! I hope you can find solace in all the great things he did in his (short yet meaningful) 25 years he had with you here on Earth and the immense love he clearly had for his family! 

Nicky, although I never met you in person, I always felt I knew you!  Yon now know why as I hope and pray my son Andy was there to help you to heaven!  I followed you and your story for so many years now!  I am so sorry you are gone, but happy you no longer live day to day in pain!  Silvia, you are in my thoughts and prayers as is your family!  May all your memories see you through this very difficult time!  ❤️❤️

Love Brent

I didn’t have the privilege of meeting Nicky in person, but I could see from all the posts that he had such a vibrant spirit.  He was a wonderful ambassador for the EB community. Rest In Peace 💕

I loved seeing Nicks smile on Facebook even though I’m in Uk I felt that I knew him his long battle with EB he suffered so much bu was always smiling god bless fly high with no pain xx

Nikki, I didn’t have the pleasure of meeting you, but I have been following you and your family on social media for a long time. I am a teacher, musician and recent adoptive mom to two boys. You have been an inspiration to me and countless others. I pray peace and comfort for your mom during this incredibly hard time. We know that God has you in His perfect existence. Sending love to your family.

I did unfortunately not get the privilege to get to know Nicky personally but Nicky changed my perspective on alot of things. He introduced me to gratitude, kindness, bravery and love. Nicky is a hero and he is a role model for many people, his mum Silvia too. The beautiful bond between Nicky and Silvia is truly something special and remarkable. I’m sending endless prayers and love to Nicky’s family.
 Sweet angel Nicky, rest in heaven.

Nikki I didn’t know you but watching your videos and following your journey made me re think my disability And made me think I’m thankful for mine ( I have cerebral palsy) I hope this makes sense. Your positive attitude is what amazes me. You all around are amazing. You will be missed by people who know you and people who didn’t but who you made an impact on. Please say hi to my dad for me and give him a hug. Rest easy buddy 

I did not have the privilege of meeting Nicky, but I recently came across his mother's Instagram last week where I began to keep up with his story. He has helped strangers from all over like myself, understand the rare pains and challenges of those we'd never even get to meet in our lifetimes. Although it hurts my heart to see a family go through such pain and suffering, I admire the strength of everyone involved & am deeply thankful that you chose to share the journey and educate others around the world from Instagram. I am still only a student studying towards my future, but this is most definitely a cause that I will be donating to when I have the financial ability.  Thank you Nicky for educating others, I will never forget you and what your story has taught me. 

OBITUARY

Nicholas Alexander Zahorcak

25 November, 1996 – 5 December, 2021

Joshua Mortuary & Joshua Memorial Park

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