May 31, 2017 – Newsday

“Glen Cove man with rare disorder needs lung transplant”

Read story: http://www.newsday.com/long-island/nassau/glen-cove-man-with-rare-disorder-needs-lung-transplant-1.13697267


May 26, 2017 – TV2

Norwegian Article - “Desperat mor leter etter det ene mennesket i verden som vil redde sønnen”

Read story: http://www.tv2.no/a/9151622/


May 26, 2017 – BT.DK

Danish Article - ” Desperat mor leder efter en helt særlig person: Jeg SKAL have den her besked ud til så mange som muligt”

Read story: http://www.bt.dk/udland/desperat-mor-leder-efter-en-helt-saerlig-person-jeg-skal-have-den-her-besked-ud-til


May 25, 2017 – Fox 5 NY

“Long Island teen lives with extremely rare disorder”

Read story: http://www.fox5ny.com/news/113597403-story


May 24, 2017 – Fox News

“Woman on desperate search to find doctor who will operate on son with rare disease”

Read story: http://www.foxnews.com/health/2017/05/24/woman-on-desperate-search-to-find-doctor-who-will-operate-on-son-with-rare-disease.html


May 23, 2017 – Daily Mail

“Mom begs internet to help her find a lung donor for her ‘miracle’ son”

Read story: http://www.dailymail.co.uk/video/news/video-1470129/Mom-begs-internet-help-lung-donor-miracle-son.html


May 22, 2017 – NBC New York

“Long Island Mom Pleads for Lung Transplant for Son With Rare Disease”

Read story: http://www.nbcnewyork.com/news/local/NY-Long-Island-Mom-Pleas-for-Lung-for-Son-With-Very-Rare-Disease-423701364.html 


3/17/17 Update - From NICO

Ok hi everyone a lot to say ok I'm getting stronger and I try to walk a lot and do everything the doctors  tell me and I get dizzy a lot but  it's not enough and I don't know what else to do and it's almost spring and I want to come home for spring but the it's ok up here and I don't hate it but I don't want to live here and the doctors and trying to get me home but I need too much oxygen and I can't home and I want to see the sky and smell the fresh air and be home I'm on but I'm getting tired and my army is helping me so much like so much and I love everyone so much and you are helping with my nurses and I need  them with me because I can't get up by myself and do anything so thanks I finally feel good and I won't give up because I am a fighter and I beat it again my mom got really sick too and I need her so my army pray for me to get home and keep donating too to my foundation because I want to live like everyone else it's sucks but I know I will get a chance to live  keep sharing and helping my army ok I need you and share 

And go to my moms page for other things going on ok now I'm tired from typing but not giving up never a quitter so don't  quit on me see I'm trying no excuses this is me fighting the fight and don't forget to share me my fight

https://www.gofundme.com/prayfornico


3/17/17 Update

A good night capas I have posted quite a bit today ..
Promise you... This is worth it.. 
Nico hasn't been able to have me lie next to him in quite a while.. He had so many machines keeping him alive around the clock ..Heartbreaking that I couldn't .. There just was no room.. and No chance I was able to lie next to my son and help him heal..  💔❤
He thrives on my healing hugs.. It just releases all negative energy..
 anything fearful right out of his soul.. it just happens.. everytime.. 💛
He used to tell me he breathed better..
and he did.. 
He always did.. 🙏🙏#mommyhugs
having been sooo sick the last week..
😷🤧😷🤧.  I am now mask free .. gloves free.. !

Nico: mom (sigh) I've been waiting for you .. smile..
Me: I was waiting for you.. (chuckle)
Nico: well? Get in..
Me: I got in...
Nico: grabs my leg. I gently place my hand on his.. I draw closeto hum his favorite song..vibrating on his back..
Nico: I love you mom..
Me: Tears washing my face ..
I love you more.. ❤️🙏
And within minutes, he was in dreamland..

No beeping sounds.. no heavy machinery sounds.. no pulling for every breath..
no quivering of his lips..
just breathing... breathing peacefully
( sigh) A Moment I needed .. a moment I will lie awake for as long as I can.. 💛🙏
Wonder what he dreaming about !


3/15/17 Update

THIS is most touching video post that my son ever made AND wanted to do.. He was so overwhelmed by "the shower nico with Scratch offs"  RUN BY MARYBETH !! HE HAD TEARS!!!
He was so touched by the love of people by the love of Mankind !!
His Heart racing and speechless..
my heart sank but filled up with so much contentment and gratitude!!
PEOPLE NEED PURPOSE.. and nico ??
Has it.. ALL OF YOU HAVE BEEN GIVINGHIMTHAT PURPOSE .
I can't breathe
TEARS!!!
SHARE THIS RANDOM ACT OF KINDNESS!!! This is what life is all about ..
RESTORING FAITH IN HUMANITY !!!

Nico Vigliotti you are loved... you are admired .. you are enamored.. you are
neededby us all...
you inspire... you encourage..  you enkindle and enliven the hearts of thousands..
 You have miles OF life left here on earth...
Mary Beth thank you for coming into his life!

NICO IS ALREADY A WINNER !!
But good luck nico!!!
#nicosarmy

https://www.gofundme.com/prayfornico

Pavingpathwaysfortomorrow.org

Join and attend our event:
 https://www.facebook.com/events/1814911008776271/?ti=cl
Celebrate life with us!!!!
 


3/13/17 Update

If you want to take a cocoa break read up on Nico..
nico came into ICU nearly 2 months ago with the flu..there were moments I was asked to "call the family" . Which means?
He may not make it.. can you imagine having to be told it's time to have your family visit bc your child..... can't even bring myself to say it.. 💔preparing my family .. MY OTHER SON.. while Nico is grappling between life and ... 💔💔

Fighting the intubation .. He fought with all his might .. He said to me,
Nico: mom I am afraid I won't wake up .. Me: Then fight... nico fight !!

So they put him on the vent that is used for intubation and tracheostomy patientsbut he was awake !!!!
You CAN NOT IMAGINE THE PAIN THE DISCOMFORT of this high pressures ventilator was... Then the drs ordered for a cough assist .. ugh. WHEN NICO INHALES, the air is fiercely forced and then upon exhale it suctions out the cough and mucous with great force..
This he hated.. this he feared.. nico was once again forced to do something he feared.. THIS IS TRUE COURAGE ..

We all take for granted the breath you take .. why would you ever give it a second thought. Right?  It's supposed to come natural .. not forced 💔🙏but with every breath my son takes , it's an effort , a it's a struggle it's a strain, yet he still strives to live .. strives to smile through it all!

The doctors shook their heads with tears..
drs: this boy has determination like no other .. He won't go down..
me: nico will fight to the end to stay awake ..
nico has had always rather stay awake then sleep .. he is still like that Today. I believe he feels that if he is given the gift of life then why sleep it off .. and I believe he stays awake because he is afraid to sleep for he is afraid of not waking up.. yes.. these are unfortunate unwanted thoughts .. but it's our reality .. so we all changed our sleeping habits .. YEARS AGO..
I can finally talk about it without tears.. or fears..
Truly don't know how we all made it through this nightmare ...
BUT SOMEHOW SOMEWAY.. we have..
I can finally show you the video that NICO wanted all to see .. without tears.. bc now he doesn't need it. YES!!!!
I can say that faith.. hope.. will...fight.. prayers...god's will ..Drs.. nurses.. family .. Nicos army !!!!

that love and support from everyone that gave him more purpose more reason to keep fighting ..
I know now it's only time .. time will get him home.. This last mile? Drs were talking about..? No.. it's not .. He has miles!!!

please help contribute and share
Our links .. it costs us 9,000 a month up here !😥 and that is just for nico and his extra medical nursing care he needs..Could you imagine I am getting calls already for hospital bills ...!????
We are not even out yet !! Dear god continue our pathway to
HOME...SWEET.... HOME

go fund me page
https://www.gofundme.com/prayfornico

We hope you go to my pages and attend our big event CASINO NIGHT given
by Testaverdi fund for Nico... at the
WOODBURY COUNTRY CLUB
APRIL 27TH
7-11
WE HAVE GRAND PRIZES COMING IN ALREADY!!!! will post later on!
More to post about nicos journey !
 


3/8/17 Update

They say time heals.. time restores.. time improves..
Having disciplined faith in god .. and in my son??
Look what can happen . His first steps after 3 weeks.!!!!!!!!!!!!
Arduous , immense effort to take EVERY BREATH.. Nico lives on!!!!
my heart ... it severs as I watch him walk and as I then watch him breathe! Happy heartbreaking monumental moment ... no matter we have a long road ahead of us. 💔

NO MATTER HE PROMISED JOSHUA HE WOULD WALK TO HIM .. and he did.. 🤗❤
SHARE SHARE SHARE
HIS FIGHT HIS EFFORT HIS STRENGTH HIS WILL.... it's all there in his eyes.. 🙏🙏
Please us help his fight to recovery .. 🙏
Share ! Let him be seen let him be heard!!!
 it just takes One click of a button and you never know it might reach the right person the right people the right community to help Nico recover 🙏🙏🙏🙏
 

https://www.gofundme.com/prayfornico


3/1/17 Update

This is from nicos aunt .. my sister Claudia..
So Kevin and I go visit my nephew in the hospital last night. When we got there he was sleeping. Evidently, he didn't go to sleep until 5 a.m that morning. I told his nurse not to wake him and let him nap. He was attached to so many different machines, but still he managed to sleep so peacefully. How?
We left him a little gift and we leave. Ten minutes later my phone rings. It's Nicolas.
Nico: hi Zizi
Me: hi Nico- I came to visit you, but you were napping.
Nico: I know...I wanted to tell you I was sorry. Sorry I was sleeping.
Me: Sorry...you're sorry Nico?
My heart sank and I choked up.
What I wanted to say is I'm sorry. I'm sorry that I can't see you every day and help you get through the day. I'm sorry that you are so far away from all of us. I'm sorry that you are attached to so many machines. I'm sorry that I complain for such stupid, little things. I am the one that is sorry---for so, so,so many things!
You are amazing Nico and you make everything seem so simple. With your determination you are coming home soon! Keep it up!
I love you so much and you never, ever have to say sorry to me or anyone ever again. Ever!
 


3/1/17 Update

https://www.gofundme.com/prayfornico

They say time heals.. time restores.. time improves..
Having disciplined faith in god .. and in my son??
Look what can happen . His first steps after 3 weeks.!!!!!!!!!!!!
Arduous , immense effort to take EVERY BREATH.. Nico lives on!!!!
my heart ... it severs as I watch him walk and as I then watch him breathe! Happy heartbreaking monumental moment ... no matter we have a long road ahead of us. 💔

NO MATTER HE PROMISED JOSHUA HE WOULD WALK TO HIM .. and he did.. 🤗❤
SHARE SHARE SHARE
HIS FIGHT HIS EFFORT HIS STRENGTH HIS WILL.... it's all there in his eyes.. 🙏🙏
Please us help his fight to recovery .. 🙏
Share ! Let him be seen let him be heard!!!
 it just takes One click of a button and you never know it might reach the right person the right people the right community to help Nico recover 🙏🙏🙏🙏
 


3/8/17 Update

He could have cried ..
He could have resented..
He could have refused..
He could have given up on life..
In his 7th week now confined and restricted to these 4 walls.. He found peace.. How??  I ask sometimes ..
I know why...
doctors in and out all day palpating , poking examining him .. up nico down nico .. chest pounding , meds, ultrasounds exrays , blood work every day, wires tubes getting in his way all day , echocardiograms IV pricks , bloods and it goes on.. 😥
but I know how he finds peace in this horrific chaos ..
When he can heal another's heart. When he can make someone else smile.. tears..
I told you about his new friend Joshua . A very sick boy with the same ventilator as his .. younger, sicker, weaker.. breaks my heart. Well it was broke nicos.
Yesterday he asked me to buy something ..
not for him.. but for Joshua..
NICO: Joshua doesn't seem like his mom sees him that muchmom and he looks so sad a lot.
ME: tears !
NICO: so can you buy him some stuff so he can do stuff so he doesn't feel alone??
ME: nico we don't have the means to do what we used to do for kids and... I paused .. you know what I will get him something .. ❤❤
how could I not !! I realized how much it means to him to do for others...
 how much it helps him healwhen he does for others ...I had to find a way.!!!!
So today Lanie his soul sister and I bought him a few lil things . Nico and Lanie wrapped them!!!
Nico got in his wheelchair which by the way took 15 minutes to get him situated.. Nico waiting patiently
We wheelhim to Joshua's room..
we couldn't go in ..
Joshua was very sickand he looked very weak . 💔💔💔
Well nico gave the grandmother the presents and we watched Joshua open them.. Joshua smiled.. Joshua lit up .. Joshua was happy ..
NICO? Was at peace ...
THIS CHILD OF MINE SHOULD WANT TO BE A LIL SELFISH ....
SHOULD WANT TO GET SPOILED ..
HE SHOULD ASK FOR THE WORLD after all he has been through in 20 years..
right? You would think? But??
It's not Nico .. HE HEALS HES HAPPY.. when he gives.. to others.. nico just told me now! As I am posting ??
Mom I JUST DONATED 100.00 to CANUCKS FOR KIDS!! Omg!! He reassured me tho that he used ? Get this... HIS OWN MONEY.. that he has been receiving as gifts. I can't .. I just can't take this child!!!! MY GODthis child deserves to live!!!
GOD WATCH HIM!!.. He is doing your work!!! 🙏💔
I pray he sees.. I pray he hears.. my nico.. 💔💔💔💔💔💔💔💔💔💔💔💔💔💔💔
#pavingpathwaysfortomorrow.org
#nicosarmy
#nicoliveson
 


3/1/17 Update

 Update on Nico :
find a cozy spot ..long read.🙏
We have been here since January and today is the 1st of March. Wow. I actually have a moment here where I can breathe .. To digest, perhaps embrace this new normal..

Well? not yet.. We are still trying to make sense of this all. And I don't honestly know if I ever will 💔but as it stands...

We are still here and dam it Nico is still here fighting !!!!!
So there is no time for crying... no time for stopping..
no time for eating...no time for sleeping...no time for questioning...

it's time to rebuild our broken hearts and restore our faith..
It's time for me to figure out how to get my son home..

Although his lungs are inrespiratory failure they are stable!!!! we are now dealing with the three bacteria infections that swarmed his stomach after the procedure. And his potassium andK are very low! His gut is distended and painful ..
The last two days have been a blur .. A congregation of doctors swarming outside his room waiting to speak to me .. Waiting to examine Nico..  bombarded with plan of care plan of action and of course my input on everything ! I didn't know which way to turn..
switchingoff from one complication to the next..

I couldn't catch my breath..
There was a point where I actually felt nauseous and dizzy lightheaded as if I was going to faint...
so winded from talking and listening ..everything being done ...Everything being discussed... just echoed through my mind . I couldn't grasp anything! All I knew is that my son is suffering.. My son is in respiratory failure..
My son is sick .. And I can't fix this !!! and that scares me..
In that moment of "merry-go-round" of doctors

I just wanted to jump off and go back to my son..  Lie right next to him and tell him everything is going to be OK ..
Maybe that's what I needed more than anything..
to lie down next to him because when I do ??
I feel his breathing , i feel his body healing in my arms ..
I feel his energy run through my whole body.. His will his fight his courage his bravery feeding my soul..
What a blur the last 2 days ..

So to bring you up-to-date.. The plan of action..
we are doing sprints of CPAPalthough he's on BiPAP permanently for nowhe must be on CPAP for two hours in order to do the barium swallow test to see how much he aspirates or what he aspirates into his lungs... Right now he went as long as one hour!!
 we're so excited.. We are also waiting very patiently to hear back from the Children's Hospital of Philadelphia about the double lung transplant🙏😥

They started him on a binge eating suppressant in hopes of easing the cravings of food...
so far it's working to some degree! .. And added another medication for the daytime it's all about trying to psychologically chemically stop him from wanting to eat I know it sounds horrible I know it sounds torturous and it literally kills me but yes in order to save his lungs or from getting a double lung transplant we need to shut off that part of the brain from craving food .. With this we have to be extra careful he does not go Renal failure so blood work will be done daily...

He has a very low level of potassium and K due to the high levels of diuretics they had to give him in order to get rid Of the fluid that was in his lungs and around his heart.. So he had a very very painful to our IV push a potassium chloride and if anyone ever had that done You know how painful it is !!!!
but once again without complaining.. without a peep.. without whining.. Without crying.. without discontentment...  he did it!!!!

My heart again shattered as his heart became tachycardic I watch his eyes twitch... his body wet from the pool of sweat coming off his body from the pain.. Ugh !!
asking every 10 minutes??
 is it over yet 💔💔💔

how I wished I could have pulled that IV out but I know he needed it.. all I could do was talk him through it put my hands over him and tell him it's almost over.. And when it was ??he smiled he held my hand and took a three hour nap! God bless this child ..

God bless our warrior ..
God bless our little engine that won't stop .. That won't give up... Until tomorrow because there's more!!!

I'm literally mentally physically psychologically spiritually drained... More importantly though Nico actually fell asleep for the first time ever at 10:15!!!!

But I can't go one day one night without saying thank you to everyone who have been putting their hands together and praying for Nico ...
putting their heads together to help Nico...  ..

With suggestions ideas support love events and fundraisers!!
AND The go fund me page!!!!!!

I don't know if there's ever a child in this world that can be loved by thousands from state to state from country to country ...as much as our Nico ..how blessed are we..🙏🙏

I cannot wait until the video collage is done and will be put on the go fund me page !!!!created by Jason A Martello and his team at MnMSocialMedia
Love to all...

https://www.gofundme.com/prayfornico


2/27/17 Update

Where do I begin💔💔💔💔💔
I thought we could go home.. I thought his vivacious spirit his tenacious will, his ultimate fight of a lifetime could get him home ..
But he is in severe respiratory failure!!
💔💔💔💔💔💔💔💔💔
Instead the doctors called in the PALLIATIVE CARE TEAM! The only answer is a double lung transplant .. We have to start planning this now..💔
We can't go home..
Our home sweet home ..
I am shattered into pieces ..
Nico will be LIVING in the hospital ... Tears flowing from my soul..
For how long????
 I don't know and this is why I am here today ASKING EVERYONE OF YOU TO SHARE SHARE SHARE !!!

He's got a heart of a survivor and I know he will make it through this!!!
This is it . I'm broken .. We are broken.. I , we, can't do this alone ..
We need everyone to help
save my Nico Please I ask EVERYONE TO SHARE AND HELP SAVE MY SON..
We are at a desperate time in our lives. 💔
This go fund me page is through our foundation! Share on all your social media for this boy ! Our warrior .. Our fighter!
This foundation will help keepmy son alive .. HELP US.
🙏💔🙏💔🙏💔🙏💔🙏
THANK YOU Jason A Martello
OF MandM Social media who put this go fund me page for our warrior.

https://www.gofundme.com/prayfornico

18532612_1488230709.277.jpg

Staying Strong

Here is Nico Vigliotti while he continues to stay strong .. Those are all the machines that are keeping him strong and here with us.. STILL HOPEFUL.. So patient .. Love him so much !
 Yes it's life-support...
 still can't make sense of this all because he still looks so good to me.. 😥
I will tell you all soon our options .. Right now I need to talk to my son..
Talk about his options ..
So unfair .. A bit disheartening .. 💔💔💔💔
It's not options about cars, apartments , colleges ..
Options about safety for his life ..
Options about saving his life ..
I have put my thoughts together I know how I'm going to do it ...
I have criedit out already..
I have paced the hallways here back and forth... But he came to me. God came to me . I got this ..
I have the strength and courage to go back into his room and have that talk..
I'm ready..💔💔💔💔💔💔.  for all the questions he may ask. fears and tears that will come .. I am ready .. BC I need to get him ready..
may God protect me and not break me while I have this godforsaken talk with my son..
This is Nico .. Today ..
Pray Nico finds a way to take this as a blessing And not a suffering 💛🙏😥💔
#pavingpathwaysfortomorrowinc
#nicosarmy
#NICOSARMY
#NICOSTRONG
 


Talk Show INterview

We were honored to be on air 

Insight to healing radio talk show interview with Alexa Servodidio

Watch the video on Facebook:

https://www.facebook.com/alexa.servodidio/posts/10155174885335312


2/20/17 Update

Share share share.......
this is a long read , sit down, have a cup of tea.. wrap yourself in a blanket, butthis is a must read. In order to come forward with us on nico's journey.
Let me explain to everyone now what happened that Friday . We got the devastating horrific news that Nico was not a candidate here at Columbia for the double lung transplant. We knew this was the only chance he had to live!! His lungs are at its worst. And now they told me no. How a simple word could turn so deadly. NO. HMMM
I don't know why I didn't break.. I don't know why I didn't fall to my knees and beg for them to give my son a chance to live. HOW I DIDN'T BREAK DOWN WITH SCREAMS OF CRIES.
I just walked a way. It was. It meant to happen HERE. I thought . This must be gods way of telling me "think deeper Debbie" thinkoutside the box, Debbie . Do not take this as a devastation or the end of hope. ' I AM HELPING YOU SAVE YOUR SON. LOOK FOR THE SIGNS..
I heard him. I heard god speak to me. The reason why they denied Nicothe transplant was because ,
Nico had a history of chronic aspiration. That's it. It's sounds unheard of right. Something that simple could deny my son.. LIFE. So if they gave him new lungs they felt he would aspirate and would destroy the new lungs!! So let me bring you back to December of 1998. Nico kept getting pneumonia for years until he was2 years old when they found out he refluxed 300 times a day from his stomach. So they performed a fundo plication. Tied the end of the esophagus so he couldn't aspirate from his stomach anymore and he would be saved. They also put in a g- tube so he would never suffer from nutrition ever. It worked. But. Ow the battle began..
At the age of 2 1/2 years old we had to keep my son from eating !yes the hardest battle for our whole family. Never were we able to sit for a family dinner. If if we did, my mom sister and myself would take Nico out for a walk. Or I would take Dante just a baby then and feed him in his high chair in his room. So Nico would not see anyone eat. He would cry many times for food. Often find him earring crumbs off the floor. Ugh 💔💔💔
But over time, convinced him food was bad for him And would make him sick.
Over the years Nico got better . He was off of oxygen for years and lived a good fun exciting life. Without oxygen.. The best years of his life .
Fast forward to that Friday when I heard that simple word, NO....
I listened to gods words that pierced through me that day. And I film striped Nico's whole life, for blocks I walked and thought about when he was good when he was bad when he ate food when he didn't. And that was it. It came to me !!!
HE MUST BE ASPIRATING FOOD FROM HIS ESOPHAGUS FROM HIS THROAT.
In utter shatter of chaos in my mind I put the pieces together . It's not the progressionof the disease that is taking my sons life. It's not these viruses that has put him at the last mile of his life. ITS FOOD.!!! Every time he eats he aspirates and it goes into his lungs!!! OMG .
Now bringing him to July 2015 . Yes the corona virus nearly took,his life. Yes IT DID, but when we got home most of you know he came home on the Ventilator . NONE THE LESS, He was on regular oxygen most of the time. Simultaneously,  he developed a humongous appetite. Not one doctor questioning why or how much. He was gaining weight and he was happy. They made sure his fundo plication was still tight and it was! Yet, month after month he was getting worse!!
This is why Nico isn't getting better. His lungs have gotten so bad from aspiration not his disease! I know it! I feel!
which is why he is where he is today. I believe with chills to the core.. I believe food is slowly taking him. .
If it wasn't for this tragedy , if it wasn't for this blasphemy of this virus. This beast. We would have never known .. god was telling me all along.. but I wasn't listening. THIS KILLS ME . I MISSED THIS. 💔💔💔 I am beating myself to the ground for this.. but maybe this was gods time .. Godspeed .. we are true believers in god speed so?
When I spoke to his pulmonarydr. And rewound the film strip of nico.. he was in tears literally saying??? HOW DID WE ALL MISS THIS OMG. . As conversation continued .. All I asked for. All I wanted to know was ?
Is there hope now?
He said,
Yes. All I needed. ❤❤❤❤
Now.... I had to deal with Nico after this and this is swear I didn't think he could handle. He almost didn't. He cried, he screamed , he hated, he feared, he cried , and blared words I can not speak of.
Oh how this killed me to the core of my heart. I wasn't sure if I could recover from watching my son helplessly watching him breakdown... HIS SPIRIT BROKE. 💔💔💔💔💔
Get tissues. I tell you this so that you can appreciate the gifts or struggles you have been given .FOR this I wouldn't EVEN wish on the devil's mother.
Eyes welled, voice cracked,
He asked me to let him go now. He said mom I had 20 great years here and thank you THEY WERE AMAZING MOM ... but it's time for me to go. Just shut the machines and let me go!! IM SO TIRED OF FIGHTING AND FOR WHAT??? I cried.
He asked me to join him to heaven.
'Mommy come with me.. mommy it's so much better there. I want to live in heaven with you , mom lets just go where I don't have to fight anymore. I just don't have in me anymore. Please ..with eyes filled with tears. Tell everyone for me mom please I love them all but they have to let me be in peace. And go to heaven where I can live. I can't ever be Normal ever now if they now take food away from me. I need to eat to live mom!! He screamed with tears.
I knew for the first time. His spirit was truly broken.. his will to fight weakened.. I was utterly Broken, shattered, torn, angered , shaken worried I was going to lose him... I don't know but by the grace of god I got him through....
1 his nurse Gary helped him through andhe himself pulled himself out of hell that night.
 I told him it wasn't time .. I will fight for you while you are tired... we all will fight for you while you rest but no it's not your time to go...I know you have life left in your heart. Even though it's broken. We will mend it for you. I will beat that heart for you while you rest.. but that's all you are allowed to do. Rest.... and let god do his thing.. and his thing is to keep you here on earth no matter. Tomorrow is a new day and I promise you , you will wake up feeling better.. this went on ALL DAY ! I couldn't run, he couldn't run. We were forced to deal with it right there and then... tortured soul he was. Broken i was...
I prayed all night he would wake up with a different soul. If not he wouldn't make it through this. 😔Well?? Wipe your tears. Smile... be I am and Nico is!!
Look who it is! Nico ! He's back! And fighting stronger harder more vigilantly than ever. What happened that. Ugh this she. He closed his eyes I don't know.  Maybe a small miracle. Yes.. it was... ❤❤💫💫❤❤💫💫
Nico's doctor was going to speak to the team of drs this week .
This will be a hurdle not so easy to overcome. We have to stop his brain from wanting food. They need to stop his craving for food. His hunger for food. They need to keep his brain chemically satisfied without food. This is be a battle with in itself... but now there is new hope. New hope brings in new light!
I feel this is it !!
this is the answer for now ....to heal his lungs in order to be on any transplant list.
God's plan.. I know it's horrific.. i know what he is going through, what my family is going through what we put all of you through,
And worst of all , I know Nico utterly suffered this time. But this was I guess the only way we could have found out and now save him.!! Now we PRAY ITS NOT TOO LATE.
Now we pray nico fights the fight of his life. !!! We will need everyone's support because we will need to leave New York to save my son . And now we have a fighting chance... ❤❤🌟⭐❤❤ we have a long road ahead of us... so stay here with us and keep him in your Prayers!
#PRAYFORNICO
#nicosarmy
#pavingpathwaysfortomorrowinc
#donateforrarelungdisease
#NICOSTRONG
 


2/15/17 Update

Update on Nico. I'm not ready to give everyone an update yet. I haven't come to terms with it all. This vicious flu virus left an aftermath that has left Nico very little reserve to breathe.. To fight to heal to recover ..
Please know he has not and will not give in to this battle .. His spirits are stringer than ever .. And so am I .. Hand in hand we are going fight through the fire.
So much is happening but untilI am ready to share which means I am ready for acceptance .. Here is an uplifting moment ..
Nicos army has grown !! More love and support is surrounding my son.
Again strong faith in humanity our community of children came together for Nico
Darlene Pergola-Apolant and
Atefeh Saatchi Pahlavan
are co-chairs for the pta community service committee at Seaman Elementary in Jericho are running a drive for Nico andPaving pathways for tomorrow. Theircommittee members are very excited to use this as our cause for the drive. The kids will be decorating hands to represent that they are helping hands for Nicos cause. No matterthe bumps or bruises Nico still won't give up on his dream!
This is what gives my son more reason to fight !
I will be posting yet another event coming from Dan Romano!
At his army grows, his determination, strength grows .
Thank you from the bottom of my heart thank you 💔💛🙏

 


2/14/17 Update

"Difficult roads often lead us to beautiful destinations" - Author Unknown

Need to share my thoughts on this...be inspired:

And a beautiful destination it was. I don't think I could have spent Valentine's Day any other way this year. It was meant for this encounter after 4 years...and it just so happens to fall on "Love Day"

A soul so deep filled with curiosity to learn more about my Nicholas, a heart filled of love for his beautiful Mother, his brother and life in itself, a selfless mind always thinking about others and how he can change and inspire others through his illness and sufferings, a body so strong yet so fragile as he continues to fight everyday to beat his odds.

I had the honor and privilege to spend this holiday with Nico and Debbie in the hospital. What an incredible young man. And the sense of humor...omg...priceless...i laughed so hard tonight!  The bond between mother and son...the shenanigan skits these 2 put on , the jokes... the love...to keep spirits up and smiles on each other's faces.  They are a team and together they pull through and weather every storm.

I gave him a smilePAK to remind him to continue to #FightHardSmileBig everyday.  He wanted to learn more about my Nicholas as Nico followed his journey. He wanted to know detail...from beginning to bitter end. Ironically...I did alot of the talking and answering Nico's questions about Nicholas. All of us were exchanging stories and very much spoke about my angel. Nico...I believe that we were both meant to inspire each other tonight as well as share Valentines Day together...all 4 of us...You, your Mom, me and Nicholas. He brought us together tonight through you, your questions and words. I actually spent Valentines Day with my Angel thanks to you.  You are a hero to me and so many others. Debbie Vigliotti...you're an incredible mother...the love of a mother...the extent that we go for for our children...God bless you. We are connected for more reasons than I think we know.

Nico Vigliotti...Again...as I said tonight...you are amazing...an inspiration...and I am so happy to have met you and spend quality time together!  I will see you soon enough!  Until then...Fight Hard SMILE Big Handsome!!  Love you ❤

 


2/13/17 Update

This video was taken the other day ! 

https://www.facebook.com/vigliottischaeffer/posts/10210572510122039

Nico's  song cowritten with Peter Shaw and singing artist 

I CAN WAIT FOR HEAVEN 

Is finally ready to be aired !!!!

we are just now looking into song distribution so PETER came up to reconnect with Nico! 

I just thought it would be the perfect timing to put this out while we wait for the results to come back for Nico it's certainly gave me some peace of mind that he will fight through this and come home

#Pavingpathwaysfortomorrowinc

#nicosarmy

#Icanwaitforheaven

#donateforthecause

#rarelungdisease


2/12/17 Update

When can this child finally breathe with ease ! When ?
He gets a tease of easy breathing and then he gets pulled back. He is on 3 different kinds of diuretics now to reduce and relieve the fluids retaining in his body and it's still not enough . He's listening to the Drs with all he has to do.. He is So receptive BC he says I'm doing all I can because I want to get home..💔💔
 I feel so bad my heart is breaking ..
they are keeping him awake until he actually has urine output! He's so tired . I'm trying to keep him up without him getting upset! I'mmassaging his back, putting on some essential oil's to open up his Lungs BC his oxygen levels for whatever reason for the past few hours has not gone up above 91 they're staying in the high 80s! not the best place to be somethings got a break here!!!!
We are both so tired but watching YouTubeof stupid stuff ..
for whatever reason he's keeping his mind off of this bizarre episode !
PRAYERS !! For a peaceful night!!
 prayers for sleep full of dreams !! Exhausted !
 


2/10/17 Update

 Drs are now getting more aggressive . Although again he's is in positive great spirits he was having difficulty to keep his oxygen levels up! I don't get it! They raised his BIPAP pressure from 17/6 to 20/6 . Ordering a bunch of tests again today
They feel he should be getting better! a sense of relief has come over me now that the Drs are just as concerned as me .
I'm demanding to have yet another meeting today!
I just don't get it he looks so good. He has good stable days and thenhis lungs get wiped out and He spirals .
Their new changes Will exhaust his body but he was asked if he could handle it and he said YESI can!!!
My heart isbreaking . Yet his heart and strength ???
Getting stronger !
I got to get myself in a better place with this all!
Never going to stop asking for for prayers !!!!!! They are working on him now . My poor son! He told me mom go get some coffee and go take a walk and come back the doctors got me for now
I can't ! I can't lose it here !!! He's just to strong willed too positive too sweet too good for me to not keep up with him!
❤️🙏😥❤️🙏😥
 


1/26/17 Update

The last virus in July 2015 Nearlytook his life leaving him on a ventilator .. Now He is in ICU fighting yet another battle for his life . Doctors are trying to be optimistic. They do not know the damage done to his body yet, as he is still fighting off the flu.. But his bloodwork is showing signs of damage.
We are so thankful that he is alive but he needs so much more extra care and we are financially strapped The extra care nursing costs 300 a day . Our foundation is our saving grace because without it Nico wouldn't get the extra medical care he needs to keep him comfortable and safe ..
Please help us to continue to help Nico fight his fight and donate.
Big or small ..
It matters . Because Nicos life matters..
Pavingpathwaysfortomorrow.org
SHARE SHARE SHARE


1/23/17 Update

We rushed Nico to the hospital by ambulance .. 💔🙏
I couldn't keep him home . Hisright side of his throat swelled up like a melon .. Leaving him stiffand in pain. That was it for me .!
We have Been here all day ..
And we just found out...
HE HAS THE FLU..
He never ever ever had it!!!!
We all feared the flu for it could be dangerous for Nico .
There is an epidemic as we were told ..
It's why he crashed the other day . Now we know .. Now we can continue to fight his fight knowing what we are up against ..
The doctorswere in utter shock.. Flabbergasted ...
 that he is not worse than he is..
That he is not in a sedated coma..
That he should not be up alert and making jokes as he is..
But then again?? It's Nico !
I told him.. It's Nico!
I can feel some relief .. Being that
THIS WAS MY BIGGEST FEAR !
And he is beating the hell out of the flu!
I just can't .. He is gods child ..
Pray he doesn't get worse and the worse was left behind ..
💔🙏❤️🙏


1/8/17 Update

A 15 MINUTE READ ! One of my hardest to bring to you
Well since July 2015til January 2017.. What a life changing experience !
A brutal virus attacked my son as most know and avalanched major shifts in our lives. Faith will determination fight heart and Nicos army? Has pulled him through.. 😌🙏
And he is stable .. Remember this as you read on. Here goes 🤗😔
But now .. As it stands ..
Having spoken to doctors over and over again , reaching for answers , beating down doors to open.. I say with utter disappointment, dejection and heartbreak ,
There is no hope in sight for my son .. There is no answer as to how long he will be on the ventilator or why he still needs it..
The doctors have spoken their final word..
Words that shattered me in pieces , words of dispirit , words of desolation .. Nauseous as I am finally ready to tell Nicos army ..
The doctors words..

"I'm sorry .. There is nothing else we can do for your son.. There isn't enough research or findings to save your son .. We don't have any answers as to how long he can live this way on a ventilator ..I don't know what else to say to you, except I'm sorry .. Let's just keep him healthy for as long as we can!" No tears no screams no desperate cries or plea for my son's life could have changed those words that day.. 💔💔💔
HOW DO I TAKE THIS AS AN ANSWER. What does that mean to you.. Imagine to me as as a mother!!!! .. A mother who has fought demons, beasts, infections, battled the angels of death for her son for 20 years and then end it with
IM SORRY.. NO!!!!  is not in my dictionary norin my vocabulary!
I won't take NO for an answer. I won't take any apologizes from the medical institution that there is no hope for my son.
How it kills me that my son still remains nameless after 20 years but this does not stop me ... Trying to make sense of this all , Sleepless nights worrisome days ...my mind over thinking heart racing against time as I watch my son losing his breath faster..
gasping for air more often... as I watch him take longer to breathe with ease.. I am left heart broken but not beaten!!!!
 "IM SORRY" WILL NOT CUT IT. I am now forced to change the path that we were on ...
forced to leave the safety net of hospital and doctors and medical care they have provided for my sonAnd search for that miracle without them..  As they say they will be there in time of need but that's all they can offer...
So hard to fathom ..so hard to register... so hard to grasp that it has come to this..
None the less with a tearful heart I still havethis unbreakable spirit .. Endlesshope that
my son's disease will have a name and he survive.. Relentlessly tirelessly searching?
A MIRACLE IN THE MAKING!!
we have found ground breaking new technology that just might save my son Nico!!!!
🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏
Unbeknownstto many for this technology is beyond its years NICO WILL BE THE FIRST to seek this technology that can possibly repair rebuild and reprogram DNA!!
We are in the process of finding funding for this research in the near future through our foundation.

Look out for our upcoming event!!

 Nico Vigliotti,  You will survive you will be the one to make an impact in this world!! This is your greater purpose !
I know it!! This just might change the shape of genetic disorders.. We have just begun to scratch the surface of this new groundbreaking research technology.. I know this must leave some of you in awe..but for me I am going to turn this horrific words .. those daunting  Wordsto something so much more positive , powerful and life-changing !!!
I raise my glass to the new year with promising new beginnings for my son and maybe many more.. Thank you to all of you family and friends near and far for keeping his spirit alive !!! It's working..
I ask for your prayers and support as we embark on this new forever-changingendeavor..

#pavingpathwaysfortomorrow
#nicosarmy
It'simperative that we SHARENico's fight Nico's plea for his life... The more that hear about Nicos story, the better chance we have at someone else knowing how to help whether it be through a higher source of prayer knowledge Or donation.
 🙏🙏🙏🙏🙏
 


4/13/16 -Nico's Fight For Life


3/18/16 -Inspirational Message

Nico tur


9/13/15 -News12 Coverage

Nico turned 19, and News12 Long Island covered the story in article titled "Birthday bash held for teen with rare lung disorder". Click the link below to ready the story.

http://longisland.news12.com/news/sick-jericho-teen-s-prom-dream-comes-true-1.10582214

 


6/26/15 - News12 Coverage

nic-prom.jpg

Nico was featured on News12 in the article titled "Sick Jericho teen's prom dream comes true". Click the link below to ready the story.

http://longisland.news12.com/news/birthday-bash-held-for-teen-with-rare-disorder-1.10839872