MobilityWorks
Accessibility for all: Helping people connect with who and what matters most
Searching...
No results found. Please try modifying your search.
Lovingly,
Debra
****************************************
“Your son has cystic fibrosis and will probably not reach his fifth birthday.”
There are no more devastating words for a mother to hear. But blessedly, the doctors were wrong and my son, Dominic, is now 30 years old. The years have been bittersweet, punctuated by countless hospitalizations and surgeries. Yet through it all, Dominic has lived his life with grace, creativity, and fearlessness. He never allows CF to define him. Today, he awaits a life-saving double lung transplant.
Without this transplant he will surely die soon.
There is so much ahead for Dominic. He’s an accomplished artist, in the spring of 2012 he finished his Master’s in Fine Arts. On August 12, 2012 he married the love of his life, Debra. They want kids. A life together.
As we have learned through the process of planning for a lung transplant, insurance does not cover all of the costs and there will be expenses that must be paid out of pocket. Some of these are deductibles, co-pays, a full time caregiver for at least 3 months after the transplant and Dominic will be on a lifetime of anti-rejection medications.
In order to help offset this extreme financial burden, a fundraising campaign in Dominic’s honor has been established with HelpHOPELive, a nonprofit organization that has been assisting the transplant community for nearly 30 years. All donations are tax deductible, are held by HelpHOPELive in the Southwest Lung Transplant Fund, and are administered by HelpHOPELive for transplant-related expenses only. Please consider making a contribution today.
We are all so grateful for your compassion and friendship throughout this journey of pain, heartache, joy, laughter and tears. Finally, the miracle we’ve been praying for is here. My son came into this world 30 years ago, our story from 1982 to today has been all about defying the odds. We’re so excited about the possibility of writing a new story for the next 30 years.
On behalf of Dominic’s entire family, thank you and God Bless you and yours, and thank you for considering our request.
Cathleen Corcoran
gracieq7@gmail.com
Dear Friends,
Dominic has received the lungs! He came out of surgery early on June 24th. It is now just 2 days after the surgery and Dominic is exceeding expectations and going strong. His determination and fighting spirit is a thing of awe. Dominic and myself are so thankful to his donor and the amazing team of doctors, and grateful for all of your support. We are just in the infancy of this great journey, and are finding our way day by day. We wanted to extend our warmest and deepest thanks to all of you who have contributed to this campaign with both donations and uplifting words. It all means so much to us and is making a fundamental impact on our experience.
Lovingly,
Debra
First off, I'd like to thank everyone who has already donated to our transplant fund, your generosity has meant so much for me and Debra. Knowing that we have the love and heartfelt support surrounding us really makes those deeply trying times a little easier to get through.
I wanted to take the time to thank everyone as well as update my status. And let me just say, It's Been Awhile! I have officially been listed for a double lung transplant for 3 full years at USC (in Los Angeles) and 1 full year at Stanford (in San Francisco Bay Area), exceeding both suggested and average wait times at each center- by a long shot. While this does have a few positive implications- living with my original lungs as long as possible is most medically optimal, it has brought about a whole host of other challenging issues. The most significant of those problems is random bouts with acute lung failure, which I experienced very rapidly and very scarily in January of 2014 ending up intubated on a ventilator for 4.5 days.
These are the scenarios I now face for having such low lung function and no reserve to handle any acute problems. In addition to that, many of you know from seeing photos of me on social media or talking to me, I am on fulltime oxygen and Bipap for sleeping to help support my lungs and clear out excess CO2. But I have been hitting the gym as much as I can, and gained back some of the weight I had lost and am trying to rebuild my body to be strong and durable once again. On the winded days, I just crank up the oxygen. I want to be a beast when I get that call so I can fly through the surgery. I jokingly tell the transplant teams at USC and Stanford that I will be the first person after the transplant to walk OUT of the operating room.
I just wanted to also share this message- I wrote this two weeks ago, while in the hospital during a disappointing course of IVs (became resistant to yet another antibiotic and I became severely allergic to my most sensitive antibiotic, leaving me with only 2 choices left to use when I'm having an active lung infection.) It is pretty much exactly how I (and Deb) have been feeling about this seemingly never-ending wait...
************
In and around hospitalizations and home IVs is usually when I do performances, the opportunity to be vulnerable on my terms, rather than at the mercy of my body breaking down. Maybe partly to satiate the abrupt end to being continuously monitored and observed by the doctors and nurses.
This time though, I was in for 10 days already and leaving now to do another 6 days of home IVs, I find myself completely burnt out and not wanting to produce. That creative energy I usually get from those rundown places of a hobbled body are just not there this time. I think the years are starting to piling up on me, the waiting, the living in limbo waiting for a transplant and the inability to fully commit to a full steam ahead way of living, is absolutely catastrophically draining. The well is starting to run low.
The stops and starts, this Sisyphean task that became my life over the last 3.5 years, is zapping me of my positivity and my talents. It has made my life and Deb's life some sort of sadistic purgatory, a treadmill in quicksand, something that is grating on both of us as we tirelessly work to stay healthy, and make work- to live the life, even with the compromises, that we want for ourselves.
When the art starts to give out on me, man that's a lot. I will sit with this and hopefully use this- but when those lungs do finally come, and I recover, Deb and I will drop everything and you'll find us in a remote part of the world waste deep in umbrella drinks getting a month long massage by a Portuguese masseuse named Fausto.
************
I have learned a lot of lessons during this journey, the biggest one being: its crazy expensive to be terminally sick, but the love and support from people around you is priceless.
Thank you all,
Love,
Dominic Quagliozzi
Loading Images
Hi DJ,
Best news ever! Just sent along a donation from Sandy and me. I hope it helps. More in the pipeline. Keep that great attitude and we pray for you each day to continue to heal and be strong. Best to you and Deb, Love...
Mark and Sandy Cummings
Dear Dominic and Deb,
We are thinking of you both and sending all healing thoughts and love,
Stacey and Gene
Dear Domenic, I am overjoyed to hear the news. My daughter Katy is sending you and your Mom's words to all the people who sent her money for the CF walk she does in Boston every year. Everyone will be so happy to share in your joy. Good luck to you and Deb in your journey forward. God bless!
Peg Prior
Your trivia team misses you and is sending the best healing vibes and thoughts your way, every day. (PS - Don't forget to study those country flags, haha!)
You know who...
Thinking of you and wishing you all the best!!!
Tammy Eddy
My thoughts and prayers go out to you, Dominic. May the wisdom of your physicians shine especially bright. May God grant you peace and resolve.
Steven Fujimoto
Hi DJ,
Glad yo hear from Mom you're on two more registries. We continue to pray for you and hope the transplant can happen soon! Enjoy that California sunshine!
Mark and Sandy Cummings
We are thinking and hoping for you, Dominic. All fingers and toes are crossed while prayers are scattered to the 4 winds on your behalf. All best from Galisteo...Shaun Gilmore and Nick Merrick
The Merrick's
You're in our prayers, DJ! Sending you lots of love!
Cassie Proal
Dominic, we are hoping and praying for your transplant to happen asap. Hang in there, Dom! There are many, many people thinking of you, praying and hoping you will be well! Love to all!
Gary and Eileen Harrington
Keep fighting DJ! You're a true inspiration man!
Dave & Abby Cote
The entire Radcliffe family is thinking of you and Deb. We're sending prayers your way man. I can't wait to come back out to California to see you guys!
Matt Radcliffe
We are thinking of you DJ, your in our thoughts and prayers and we are sending love to you and your family, I hope you get a lung transplant soon <3
Erin, Dan and Layla McKinley
DJ- we're thinking positive for you and hoping you are feeling healthy and well again!
Lisa, Will, and Archer Kurt
Thinking if you DJ...sending my live and prayers your way.
Meghan Maroney
Keeping you in our thoughts and prayers Dominic
Gary & Nicole Maynard
DJ, our thoughts and prayers are with you. My next marathon will be for CF.
— Mario Fraioli & Christine Gould
Dominic, you are in my thoughts. Brie Tangney
Brie Tangney
You are in our thoughts and prayers - then again, you have been since the days of hockey with Moms pillows for goalie pads. We are praying for your surgery to be here soon so you can get back to what you enjoy doing. Your photos are beautiful, the family has added on a few new members I see. And how beautiful you Mom looks, she is a lovely person. Please pass on a hello to Mom for me. Good luck D.J., I pray that this surgery is soon. Love Diana and Bill
Diana
DJ! Just a note to say hi and that I am thinking about you. Keep the positivity and creativity up. Sending some good vibes your way. :)
Jill Charest (Kasierski)
Dj you can have one of my lungs!!! I think of you often when I'm at my parents and I see the beautiful painting you did for my dad. My thoughts and prayers are with you and your family... Lots of love from Worcester.
Ryan brownell
Hey DJ! I thought of you as soon as the Pats lost to the Broncos last week! I still remember you wearing your Broncos jersey all the time at SPM back during their last super bowl run. Definitely sending positive thoughts your way. Stay strong buddy. I hope to hear good news about your healthy recovery soon.
Bill Marsh
Praying for you! You have lots of positive thoughts and energy being sent your way.
Sarah Youngstrom
Dominic I've known you since elementary school. I didn't really know that you have been fighting this battle. Your strong and clearly determined to fight this fight. Keep smiling and stay strong. Your in my prayers. Xx
Jennifer Kline
Praying for your lungs to come to you. Gods work will be done in his time. Keep positive and stay strong. Your Deebs needs you to be her forever man. We are all thinking of you and sending you our best wishes for a healthy recovery.
Suzanne Krol
You're in our thoughts and prayers, stay strong and keep fighting!
Mike Shapiro & Danielle Berger
Hang in Deej and Deb, we are all here with you, behind you, and beside you with our Prayers and our Love, also Heart to Heart surrounding Mom, Peter and your wonderful sisters and their beautiful families. We Love you all so very much.....The Dionis'
Jan and Mike Dionis
Dominic, you have been such a source of inspiration to us. Keep fighting! You have so much to live for!!!
We can't wait for you to get your new lungs- can't think of a more deserving recipient. Stay strong!
Lauren, Giovanni & Anastasia Tropeano
Am I your first west-coast signer on this website? Of course I'll help. We CSULA alumae have to stick together. Painters rule! Georgia
Georgia Love, Los Angeles
Hi DJ. I can't believe youre old enough to get married. When I read your web site I remembered making you peanut butter and jelly sandwiches for your midnight snacks, with the peanut butter and jelly all the way to the crust:) wishing you luck and praying for you. ChrisO 5 east
Chris Oleksyk / Worcester ma
Hey there DJ (or are you Dominic now that you are grown up?) hahaha. Glad to hear that you are getting married - so happpy for you. I keep in touch with your mother via email. I will be happy to help however I can. I will spread the work with this website. Hang in there and keep fighting those odds. Miss You Sending prayers your way. Love, Cathy G
Cathy Guadagnoli
Make checks payable to:
Help Hope Live
Note in memo:
In honor of Dominic Quagliozzi
Mail to:
Help Hope Live
2 Radnor Corporate Center
Suite 100
100 Matsonford Road
Radnor, PA 19087
Donor preference is important to us. Please specify in writing if you wish for your name or donation amount to be kept private.
Subscribe to this campaign to receive updates.
Accessibility for all: Helping people connect with who and what matters most
Building leading-edge mobility products
One of the largest mobility dealers in the U.S.
Consult with specially-trained pharmacists, get your medications for pickup or delivery and more
All news, and all that matters to you
Your first step to optimized communications
The event for the disability community
Born to connect, empower and inspire the rare disease community.
A mobility dealer for wheelchair accessible vehicles and adaptive equipment