Blog: Why We Love The MOMster

 Why We Love The MOMster

Introduction

I recently did a live interview with Shannon Mulroy. 

https://fb.watch/a7dQrvEfoT/

Every once in a while, you run across a great kidney transplant story that is so good, you just have to share it. But the Kidney Story you're about to read about involves not one, not two, not three but at least four kidney transplants with the possibility of more!

Shannon Mulroy has a young daughter, Julia who, at the age of 15, was living an idillac life in suburban New York, going to high school, playing soccer and lacrosse and hanging out with friends. Suddenly, her eyes and legs began to swell and Julia was not feeling well.

After extensive testing and workup at New York-Presbyterian/Columbia and a biopsy, Julia was diagnosed with FSGS, Focal Segmental Gloneruloscleesis, a disease that attacks the kidney' s filters causing permanent damage. Despite everyone's best efforts, including her remarkable family and notable physicians, Julia 's kidneys failed. She was put on Hemo dialysis as a bridge to a kidney transplant.

That when Shannon, who calls herself the MOMster, kicked into overdrive. She took steps to help her daughter find a kidney donor. Shannon was initially ruled out as a direct donor to Julia because of possible genetic mutations, someone outside of the family would have to donate. Shannon reached out on social media and to her friends with a heartbreaking letter describing her daughter's situation. A donor was found through Julia's twin brother's baseball team at St Anthony's High School in Huntington, Long Island.

A baseball mom, Lisa Calla, who is also a lawyer, donated to Julia on June 27th, 2019 at New York-Presbyterian. This so inspired Lisa's husband Guy, that he made an indirect, anonymous kidney donation. Later, Shannon herself through paired exchange, donated a kidney in return for a voucher in case Julia needs a kidney transplant again in the future. Shannon' s husband is set to do the same thing in the near future.

Since that time Shannon has become a very active kidney advocate including registering donors, speaking out and working with LiveOnNY, Nephcure, Goldfinch Bio, NPACT, CureGN Study and Kidney/Solutions with our friend Kent Bressler.

She, Lisa and Julia are also award winners!

I have been a Kidney Patient for over 41 years and an active kidney advocate for a decade. This is one of the most inspiring Kidney Stories I have ever encountered! Shannon Mulroy is a true kidney hero. I admire her so much. I think you will too.

Blindsided

Shannon is a happily married woman living in Long Island with her husband and 2 twin children. Julia, one of the twins, at the age of 15 was a happy, well-adjusted girl, who from all external appearances was healthy and normal. Suddenly, and without warning, her eyes and legs began to swell. Shannon took the normal steps to help her daughter, giving her Benadryl and taking her to the doctor. Nothing seemed to help

After extensive testing and workup at New York-Presbyterian/Columbia under the close supervision of pediatric nephrologist, Dr. Namrata Jain and Dr. Andrew Bomback, that included a kidney biopsy, Julia was diagnosed with FSGS, Focal Segmental Gloneruloscleesis, a disease than attacks the kidney's filtering system, causing permanent, irreparable damage. There is no cure for FSGS and the course of treatment only works marginally at best. The best possible result for young Julia was a kidney transplant, that would take time and is no easy feat to achieve. Her Mother has told us that she and her family were totally "blindsided" by this diagnosis

Despite everyone's best efforts, including her remarkable family and notable physicians, Julia's kidneys failed and she was put on dialysis as a bridge to a kidney transplant. She was no longer a normal high school student, staying home, missing her prom and graduation.

Mom Can't Donate to Her Daughter

Shannon is not the type to sit still when a family member is in crisis. Just the opposite, for Shannon, no stone would be unturned in an effort to save her daughter. Initially, Shannon offered to directly donate a kidney to Julia. The doctors turned her down. Shannon was ruled out as a direct donor to Julia due to possible genetic mutations, even after genetic testing. The most difficult way, the only way for young Julia to find her kidney match would have to come from a stranger, outside of the family. To say that the situation was frightening and desperate is an understatement.

The MOMster Goes to Work

A lesser person under these circumstances may have given up and let the fates take their course. Shannon Mulroy is not such a person. Her character is composed as a fighter, and Mom came out swinging. Shannon reached out on social media with a heartfelt letter describing Julia's situation. She is normally a very private person, particularly when it comes to family matters. Not this time, she would speak to anyone who would listen, trying to find a donor. Anything to save Julia.

A Donor is Miraculously Found

Shannon's efforts to reach outside of her comfort zone finally paid off. A passing conversation with another baseball mom from her son TJ's team at St. Anthony's High School led to a donor!

A Kidney Transplant for Julia

On June 27th, 2019 at New York Presbyterian, Baseball Mom, Lisa Calla, who is also a respected attorney donated to Julia Mulroy, saving her life. Julia now leads the life of a happy, independent college student because of Lisa's gift.

This so inspired Lisa's husband Guy, that he later make an indirect anonymous kidney donation.

Unfortunately, the FSGS came back an attacker the transplanted kidney. Julia has never been in full remission and continues to battle the disease

Insuring Julia's Kidney Future

As many of you know, the kidney life of a pediatric kidney transplant patient is unlike most of our kidney lives. While those of us who are diagnosed later in life hope that one kidney transplant will last us a lifetime. A pediatric kidney patient does not have this luxury. Frequently, their parents or caretakers are told up front by their nephrologists or kidney transplant surgeons that the child will need multiple kidney transplants over the course of their lives

"In general, the estimated half-life for transplanted kidneys in children is 12–15 years, therefore children with ESRD often require more than one kidney transplant in their lifetime."

Long-term Outcomes of Kidney Transplantation in Children, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6251502/#S5title

As a responsible parent, how do you ensure your child's kidney future, even after you are gone? Shannon and her husband found a way. Through paired donation (a donor swap), on August 12th, 2021, Shannon was able to donate a kidney to a complete stranger in return for a voucher for her daughter. What this means is that because of Shannon' s charitable act, if Julia should ever need another kidney transplant in her lifetime, with the voucher, she would be moved to the top of the Kidney Transplant List.

Voucher Program

https://www.kidneyregistry.org/for-centers/voucher-program/;

Family Voucher Donation 

https://www.kidneyregistry.org/for-donors/i-want-to-help-a-stranger-in-need-of-a-kidney/family-voucher-donation/;

Innovative Kidney Donor 'Voucher' System Is Saving Lives 

https://www.webmd.com/digestive-disorders/news/20210624/innovative-kidney-donor-voucher-system-is-saving-lives.

Shannon's husband will do the same thing in the near future to ensure his little girl's kidney future.

Shannon The Kidney Advocate Gives Back

Many times, once a family member's objectives are achieved on behalf of their loved ones, they quickly disappear and you never hear from them again. Shannon Mulroy is so grateful for her daughter's gift, she has decided to honor it by giving back as a tireless kidney advocate. She has become a very active kidney advocate including registering donors, speaking out and working with LiveOnNY, Nephcure, Goldfinch Bio, NPACT, CureGN Study and Kidney/Solutions with our friend Kent Bressler. Helping others to receive kidney transplant, including preemptive kidney transplants (transplant before dialysis) have joyfully become her obsession.

In Shannon's Own Words:

"Some Things I’m involved with:

Volunteer with

https://www.liveonny.org/who-we-are/ 

◦ hold events at various places to register and educate people as to the importance and need for organ donors. 

◦ Pre pandemic I would go to hospitals with one of their specialist to go on rounds with docs and nurses sharing our story

◦ Speak at universities for example to spoke to 600 resident med students sharing my story 

Volunteer with 

https://nephcure.org/aboutus/our-mission/

◦ New York State Community Leader for support and patient engagement  

◦ Host events to spread awareness for those affected by rare proteins spilling diseases

◦ Mentor and support patients and caregivers to help navigate this terrible disease 

◦ Host a monthly support group via zoom for dialysis and transplant patients and caregivers 

Patient and caregiver advisory board for

If you scroll down you can see me and Kent and this is where we met

https://www.goldfinchbio.com/kidney-focus/focal-segmental-glomerulosclerosis

◦ Guided by Amanda Grandinetti we assist By providing their doctors,scientists, and researchers real actual patient and caregiver‘s point of you. 

◦ We have helped designed the Halo Survey. this was the first comprehensive patient perspective survey of its kind in the kidney disease space. They plan to use the survey’s findings to educate researchers, clinicians and other stakeholders about kidney disease patients’ real-world experiences with treatment options.

Part of NPACT - NEPTUNE Patient Advisory Council for Therapies

https://www.neptune-study.org/

◦ NPACT is a participant advisory panel consisting of patientsand parents of children with nephrotic syndrome.  We provide feedback on research study design,study materials, and to help develop study-specific patient reported outcomes.

◦ When giving the opportunity I speak to their doctors, researchers, and scientists from a caregivers point of view. This was one of my short talks with 95 of them. 

ShannonsStory.mp4


Patient/caregiver advisory board


CureGN Study


https://curegn-org.webflow.io/about


◦ Provide insight from a caregiver‘s point of you to help with the study. 


◦ My daughter is also a participant in the study. 


Living donor coordinator for Kidney Solutions. This is a new position and I will be developing this program into something spectacular!


Kidney Solutions – A Network of Transplant Experience


◦ Work with the founder Kent Bressler to help support, mentor, and guide potential living donors 


◦ Work to try to Connect Potential donors with recipients


Here are a few things I did.


Tv interview 10/2020


https://www.youtube.com/watch?v=6Ydvww3T4pc


Radio show 9/2020


https://www.youtube.com/watch?v=R_bFfRmGFG8


Newspaper article a few days post transplant. There was an article and a video they did. Typically if a thing pops up to subscribe you just X out and open


https://www.newsday.com/long-island/suffolk/kidney-transplant-st-anthony-s-1.33497104


An article that New York Presbyterian Hospital runs throughout their entire system


https://www.nyp.org/patient-stories/the-one-bean-team"


Conclusion


Shannon Mulroy's Kidney Story is inspirational. During the Broadcast, she disclosed that at least 2 more people were moved to donate a kidney because of her story. I am very proud to call her my friend. Shannon herself says it best, "I will always give everything but up. We need to find a cure, we deserve to find a cure...we will NEVER give up." Gotta love a Mom who never gives up working for all of us kidney patients.