Our Story:

For those of us who assembled this website, Jules is a daughter, a sister, or a friend.

A Mother’s Story:

I’m so fortunate and proud to have Julia (affectionately called Jules) as my daughter. She is smart, creative, and insightful, gregarious, spirited, and outspoken, with a fierce loyalty to friends, a passion for animals, a strong sense of justice, and a flair for the dramatic. The qualities that stand out most, however, are her courage and compassion. Commenting on Jules' having raised $425 for the Kidney Foundation on Facebook, one of her friends described her as “the bravest and most giving person I’ve ever met.” Jules has been fearlessly confronting illness since the tender age of 3, when I marveled at her calmly observing her own blood being drawn during a serious infection. Migraines emerged at age 9. By 10, around the same time as her best friend, Nora, was diagnosed with leukemia, she developed a rheumatoid condition which, I believe, was a manifestation of her empathy for Nora. From then on the intensity of Jules' symptoms seemed to wax and wane in parallel with Nora’s. Tragically, four years later Nora passed away, and within months Jules' ailment morphed into lupus. At that time Jules predicted that she would also die young. I discouraged that kind of thinking, not wanting her to surrender to pessimism. Instead, these experiences and her desire to help others inspired Jules to become a nurse, but she was compelled to drop out of nursing school when her condition further deteriorated into lupus nephritis. Now, at age 31, Jules' prediction about an early demise has become reality. Her kidneys have completely failed, and her life is dominated by dialysis which, though life-preserving, is debilitating in itself. As devastated as she is, Jules continues to meet these challenges with courage and dogged determination. A transplant promises to give her a life again, and she will not relent until a living donor comes forward. Learn more at: WWW.JULESNEEDSAKIDNEY.COM       

HOW KIDNEY FAILURE HAS AFFECTED JULIA'S LIFE... 
DIALYSIS: She is currently on "life support", undergoing four hours of dialysis three times a week, leaving her feeling nauseated, weak, and exhausted without motivation or opportunity to do much else.
EIGHT SURGERIES: Repeated insertion and removal of peritoneal and hemodialysis catheters (in one instance causing a pulmonary blood clot, a course of blood thinners, and eventual hair loss) as well as a fistula placement and subsequent repositioning. 

PERPETUAL PAIN: In joints from lupus, in intestines from gastroparesis, in head from migraines.                                                                                                  

KIDNEY CONFUSION: Memory loss caused by toxins in Jules’ bloodstream.                                                                                            

INABILITY TO WORK: Jules has needed to put her career as a horse trainer on hold. She cannot even visit the barn due to danger of sepsis if her dialysis catheter site were to become infected. 

DIMINISHED QUALITY OF LIFE: Prohibitions against large social gatherings, showering, strenuous exercise, swimming, sunbathing, attending concerts, and especially horseback riding (her most fulfilling activity).  

TRAVEL HIATUS: Jules, a history nerd, had planned to visit the D-Day landing sites in France for her 30th birthday. Instead she was in the hospital being treated for lupus nephritis and gastroparesis.

DIETARY AND FLUID RESTRICTIONS for lupus nephritis and gastroparesis.

EMOTIONAL DISTRESS: Julia endures the unfathomable agony of facing her own mortality at 31: "With lupus nephritis I don't know how many days I have left."

A transplant would mean a life worth living!! Jules envisions a time when she can once again live to the fullest, free from the constant terror of imminent death. I realize we are making a monumental request, but a kidney from a living donor can save Jules’ life while the donor can maintain a normal, robust life with only one kidney. I'm extremely saddened and frustrated that although I am blood type B, pre-existing conditions disqualify me from becoming Julia’s donor. As a mother I am heartbroken that I can't kiss Jules and make it all better, but there are important ways that others can help.  

 Please SHARE Jules' story on social media to help find her a new kidney. GO to her Facebook page, Jules Needs A Kidney, and FOLLOW her on Instagram @haute_hemodialysis to witness her battle with kidney failure and read her advice offered to encourage others in similar circumstances. THANK YOU SO MUCH!

If you have questions, comments, or a message for Jules, please email her Living Donor Champions (parents, Joan and Jeff Aronson) at JULESNEEDSAKIDNEY@COMCAST.NET 

Of course, the greatest gift of all would be to sign up as a potential donor by visiting http://www.pslmc.com/signmeup  

Resources:

     WEBSITE: WWW.JULESNEEDSAKIDNEY.COM

    FACEBOOK: Jules Needs A Kidney 

     INSTAGRAM: @haute_hemodialysis

     EMAIL: julesneedsakidney@comcast.net

     TO DONATE: http://www.pslmc.com/signmeup   

A friend’s story: Colin

My name is Colin Roy, Jules’ Living Donor Champion, and I have considered her my closest and best friend since the semester that I transferred to UConn, Storrs in Spring of 2012. I met her through a mutual friend who introduced us because he had a feeling we would vibe tremendously – and he wasn’t wrong. I’ll never forget the first time he took me to Willy Oaks – her apartment complex – and I met her and a few of her friends while we sat out in the sun and played with her pup, Bailey. A large and beautiful dog, I never had met an animal with such human-like personality and good behavior. Bailey wasn’t only Jules’ best friend, but best friends and family to all who became close to Jules. That was the first time I knew Jules was an angel, and that this was a new relationship that would last the tests of time.

Transferring to UConn was my third University transfer, and as an 18-year-old boy still figuring out what he wanted to do with his life, it wasn’t an easy feat. Jules quickly became family to me, and we shared everything together, including all-nighters cramming for exams in the school library. She welcomed me into her life and her social networks very soon after, and honestly, those days were when my excitement for life and the future first began. I attribute my current growth and well-being strongly to Jules’ huge heart and never-ending love for me and everyone else close to her. Kindness, trust, love and protection are four wonderful words that I attribute to Jules, both then and today, despite her battle with lupus that she was fighting then, and through today, as the disease has escalated to lupus nephritis and she fights daily waiting for her transplant day to come and a better chapter to begin where she can return to some kind of normalcy.

Jules quickly became much more than a best friend, not only to me but all those around her. She became our sister, our confidante, and our “Mama Jules”, always the one taking care of those around her, making sure everyone was smiling and enjoying themselves. She went out of her way to put others first and connect those close to her to each other. Together we made friends from around the country, from all walks of life, through countless camping trips and road trips. All my friends became hers, and hers became mine, and we grew pods of families from many other states. She has impacted many lives as she fights her battle and shares her struggles both in day-to-day life and with her social media campaign to find a living donor.

Jules wasn’t only by my side through many – and most – magical moments and adventures since the day we met. She also stayed with me and held my hand through my parents’ separation, the loss and grief over my cousin Eric Collins, and as I fell in and out of love in my late teenage years and twenties. I can only ever wish that I’ve been as good a friend and spiritual sibling as she’s been to me, since I can’t name anyone in my life other than my blood mother who has done and been through more with me than this woman. She is strong and fierce, positively toucing the life of everyone whom she meets, and I pray every day for the battle with her health to get easier, but we know that a new tomorrow will only come when a living kidney donor emerges to grant her a life-saving transplant.

In the first few years of my relationship with Jules, lupus was always in the picture, a lingering demon that she carried with her everywhere she went. She would randomly feel sick and experience pain that no one could understand, but she dealt with it, pushed through, and never became a burden. She took care of herself well enough to be able to go on road trips, camping trips, and see some amazing musical concerts with me. There certainly were days when the lupus would flare and we couldn’t be as active as we hoped, but it was still just as lovely and beautiful to hang out inside and be in each other’s company. It took several years but her condition gradually deteriorated into lupus nephritis. Initially it was manageable, but a year ago Jules’ kidneys completely failed necessitating 4 hours 3 days a week on a dialysis machine, making her sicker than ever, nauseated, headachy, and weak. It became clear that a transplant from a living kidney donor was her best chance for survival.

Kidney failure has essentially been preventing Jules from living the life she wishes, and deserves, to live. It is nearly impossible for her to travel and resume activities that we used to love and places we used to frequent. She cannot ride and take care of her horses; we can’t travel back and forth between NYC and Denver to spend as much time with each other camping, hiking, or enjoying hours under the sun listening to our favorite bands together. We’ve had to find new alternative ways to share our time – so much so that recently Jules even took me for my first manicure and pedicure. The best part about that day was simply being next to Jules while we were getting pampered, only to say that all the moments I spend with Jules are the best moments of my life. I wish and pray that even for one day I could wear her shoes and deal with her kidney failure while she could live symptom-free, running around the world as she deserves to in good health. It is my belief and understanding that a transplant would yield Jules a meaningful and fulfilling future, with much less pain and sickness, the freedom to go to Greece together as we talk of often, go on boat rides across beautiful lakes and oceans, camp and hike in mesmerizing parks around the globe, and share new adventures and create new memories. I know of the life that Jules wants and deserves to live, and I want that for her more than anything in the world. Not only that, but I want to be with her as her brother and best friend through all of it. However, for that to happen it’s essential that she find a living kidney donor. Please sign up to be the person who can save Jules’ life!!!!

It breaks my heart that I cannot be the donor for Jules, since I have struggled through my own issues with kidney stones and have family history of renal osteodystrophy. If I had healthy kidneys I would volunteer in a heartbeat. Because of this, as her Living Donor Champion I will stand by Jules through everything and help her campaign by sharing her story with as many people as we can reach until the angel appears who will change and save her life. I cannot stress enough the importance and necessity of this procedure to provide Jules a better, safer, and healthier reality. No one should have to endure what Jules is currently contending with, even though she does it with elegance and perseverance, fighting not only for herself, but everyone else who loves her and cannot imagine their life without Mama Jules. Jules is the reason I could have the courage to move to New York City from our home state of Connecticut; she’s the reason I had the belief in myself to start my own real estate business; she’s the reason I wake up every day and thank the Sun for the gift of a new day. Jules is my soul mate and nothing short of one of the greatest gifts to my life, and she needs a successful kidney transplant more than anything. I am here for it all and cannot wait to be there once she receives her transplant, hopefully sooner than later, when I can join hands with her again and we can freely enjoy all that life has to offer, radiating our light onto everyone we meet together for the rest of our lives.

Jules is and always will be my strongest supporter, my voice of reason, and my source of trust and positivity, despite her struggles and unfortunate situation. Julia Aronson, I love you more than any words can properly depict! You have come so far and have fought through so much; you have touched so many lives, and your reward is becoming so much closer.

With strength, love, prayers, and commitment,

Colin Roy, forever Jules’ Living Donor Champion