Molly Pearce-Eaker Foundation

About Molly

Molly was born in Arizona, on November 17, 1988. I had been on hospital bed rest for several weeks before her birth. The most modern health care available in those years was given to Molly and me to assure her being a live birth. She came one month early due to the complications, and was at first, seemingly healthy. During the 36 hours following her birth, we were to learn the devastating news that she needed an emergency exploratory surgery.

The surgery resulted in the discovery that she would not have long to live. Her entire bowel small and large were formed without nerve cells, called “Ganglion Cells”. After a few days of research done by the surgeon, Dr. Joseph Zerella (our Hero), it was determined that Molly was one of three people alive in the U.S. with a rare form of Hirschsprung’s Disease, subcategory Total Aganglionic Hirschsprung’s Disease.

Dr. Zerella and the interventional support of Dr. Kristi Ingebo and the Gastro-Intestinal (GI) Team at Phoenix Children’s Hospital would perform several early surgeries. Molly lived her life with an ostomy and very short small bowel, having had the remainder of her intestines removed due to her malfunctioning GI tract.

Molly was one of the first pediatric patients on Total Parenteral Nutrition (TPN), which is a nutritional formula  that contains nutrients such as glucose, amino acids, lipids and added vitamins and dietary minerals, that is given intravenously (IV).  TPN for infants was experimental at that time. She was also supported on enteral feeds (aka tube feeds) through a gastrointestinal-tube (G-tube).

She was featured in the Pediatric JAMA, 1989 in an article written by her physician, Dr. Zerella.

She was a poster & “TV Baby” for Phoenix Children’s Hospital in 1989.

Molly began to wean off of her IV TPN feeds when she was 6 ½ , thanks to my involvement in a nutritional supplement company called Mannatech. With the product Ambrotose, Molly was able to begin to eat a limited diet and was on NO pharmaceuticals by age 7.

Our family moved to Boulder, Colorado in 1996. Molly attended Friends School and thrived, riding her horses and enjoying her friends and family. She was at peak health for a couple of years.

After moving to Colorado, Molly was being seen by the GI group at Denver Children’s Hospital (DCH).

She had several inpatient visits due to dehydration, but everyone marveled at her ability to thrive without the need of TPN. Around age 11, she began to struggle with periodic episodes of bacterial overgrowth due to her short bowel. Her doctors were treating her two or three times a year with the antibiotic, Bactrim. She needed to have a small surgery to reform her stoma from her bowel surgery as an infant. Her main doctor at DCH over rode our feelings about this and instead prescribed a dangerous pharmaceutical, which turned out to be was a fatal mistake. This started Molly down a road that took her from no drugs, to a life of transplants and surgeries and ultimately her death.

 

IMPORTANT NOTE: ALWAYS BE SURE YOUR DOCTOR TAKES FIVE MINUTES TO DOUBLE CHECK THEIR PHYSICIAN DESK REFERENCE. Her doctor did not. If he had, he would have seen that it says in black and white, not to prescribe what he did.


In 2003, Molly was featured in People magazine for Star Bright Foundation. . . the Steven Spielberg Foundation for Chronically Ill Kids. This is where she met her best friend, Lauren Henderson. (click on the picture to read the article)


In 2005, while Molly was visiting her father in Phoenix, she was rushed to the hospital and then she was transferred here to Denver and went into the ICU for 90 days; she was near death. This happened as a result of an aminoglycoside . . . in lay terms, it started killing both her kidneys and she would lose them within five years. It also killed what little bowel
she had; the small strip that had adapted so well was now lost.

 After that Molly’s life changed back to one of IV TPN every day.

When Molly was 16 ½, we were referred to University of Nebraska Medical Center (UNMC), in Omaha, NE, for consideration of a possible small bowel transplant. Molly and I were both frightened but also knew it was her only chance of survival. Everything had been tried and to no avail. She and I traveled to Omaha several times to get her evaluations done and finally she was listed.

In just under 30 days, we got the call that there was a small bowel available, and flew to the UNMC for her first transplant. At that time only a couple hundred had been performed and the team felt she was an excellent candidate. Molly was the 211th small bowel transplant. She was a determined young lady and was truly amazing in her recovery process.

We were back home in Colorado in record time. She began to add foods she had never eaten in her life and it was all a tremendous success. She was finally able to eat whatever she wanted.

The following year, due to the damage done by the mis-prescribed drug when she was 11, her kidneys were now failing. I was asked to be evaluated as a donor candidate, and thankfully I was a perfect match. We went to Omaha to complete that leg of her journey in June 2007. 

Molly bounced back to amazing health, actually the best health of her 18 years of life. Although as, UNMC explained and taught us, the immune suppression, blood tests, doctor’s visits, and many measures required post transplant were a lot for a patient to manage, Molly managed very well and matured a lot from the whole series of events.

At 19 years old, she was able to complete one of her major dreams:  to relocate to Los Angeles and live near her friend Lauren. They had remained close friends through the years. Although it was so difficult to imagine her out in Los Angeles, both her father and I worked to make it possible.  She had a cute apartment, her Corgi dog and her cat. We boarded her horse that I shipped out to her, and loads of new loving friends. She worked as a dog walker, and also at the VCA Brentwood as a front desk receptionist.

She met her fiancé, Corey Eaker, while attending a communications class in college in Santa Monica, California. It was love at first sight for them both and during the first two plus years of their relationship, Corey was even able to take her to Paris. The trip was truly another of her dreams come to fruition! 

 

Corey and Molly also participated on events for DonateLife.net where they both worked to raise awareness of the importance of Organ Donation.

 

In March of 2011, I received an emergent call from UCLA Transplant Center. Molly had been admitted and was in extreme, sudden renal failure. The doctors felt her organs were starting a failure cascade and I needed to come as soon as I possibly could. My husband Dane and I were there in 6 hours and so saddened and shocked to see the turn of events. She had suffered from an asymptomatic urine infection, which attacked her transplanted kidney.

She was in the UCLA Medical Center for several weeks and after discharge was told the kidney had recovered. However, over the next 6 months, it was clear that the kidney was in fact in deep trouble.

By September of 2011, we were told she would need another kidney transplant. Molly moved back home in September and began dialysis, which was exhausting for her. We also began the search for a new kidney for her. Several good friends were tested, but no one was a match. Finally, another hero, our friend Craig Payne from Canada, was tested and got the good news he was in fact a match! Molly was so excited and met Craig during a check-up while at UNMC.

That same week, during her check-up, Molly received devastating news. . . the bowel had not held up from all the trauma of the renal event and dialysis, etc.

In August of 2012, she was told that she needed to have the bowel taken back out, called an “explantation”.

This was one of the darkest times of her life. It was a tragic setback and especially when she thought that a kidney transplant would suffice. After the bowel removal, she came back home to Boulder where she went on dialysis four times a week and TPN  to keep her going at home.

Corey wrestled with completing college in Los Angeles and wanting needing to be by her side. Understanding that college would be there and could wait, and that she really needed his love and support, he joined her here at our home helping with her care and working to keep her positive.

Molly contracted a blood infection and had to return to UNMC‘s ICU. After recovering from the blood infection, she stayed in-patient because the kidney had to also be explanted. This was done in October 2012.

Molly was then listed as a multi-visceral transplant candidate, needing four organs: Kidney, Pancreas, Liver and Bowel. This began her 228 day wait on the fifth floor of the UNMC.

Taking turns between myself, her father Corey and a few close friends, someone was with her every day. Corey again put his own career aside and lived at the hospital in her room for weeks at a time.

The nature of Molly’s situation attracted a lot of media. Some self-serving organizations used her case to raise funds and were unscrupulous. Molly knew she had always trusted the good work of DonateLife.net and that is the organization her Foundation supports. . . no others.  Molly also knew that it was doubtful that she would benefit personally from the media exposure but, because her story was extreme, it would catch the public’s attention and hopefully help others. She had already been spending her life raising awareness in healthy people of how important it is to donate. She would tell everyone on social media and regular media to:

a)         Register on driver’s license
b)         Tell their loved ones
c)         AND go to DonateLife.net and register as an Organ Donor.

She had donated her time at Donate Life.net in Los Angeles, California while attending college in Santa Monica.

The UNMC hospital is “first class” all the way. They did an extraordinary job and should receive a medal.  Please see our tribute to the Fabulous Fifth Floor and Molly’s desire for the Foundation to help others in her situation.

After so many long days, weeks and months waiting on TPN and dialysis, Molly’s liver also failed. I was called to come as soon as possible on May 29th. My husband and I flew there that morning.  I had just spent the previous week with her while Corey made a trip back home to LA and had only left her three days before. The Doctors explained to us that she no longer qualified for the transplant. The most devastating news I have ever had in my life. . . our sweet girl was in fact losing the battle. Corey flew out that night and joined us and her father came in from Phoenix the next day.  

UNMC determined her to be too sick for transplant on May 29th and she could not remain on the UNOS list. She was in so much pain that any time she was conscious, it was unbearable for her. She would not have survived the surgery or any more days of waiting. Dialysis 5 times a week, TPN 24/7, a great deal of pain, and receiving lots of pain medication. . . a very tough end.

After Molly was removed from the transplant list, and support was lessened, the UNMC Fabulous Fifth Floor offered to throw Corey and Molly a wedding. They were so happy to be able to complete yet another of Molly’s dreams.

Molly and Corey were married at UNMC on June 1, 2013, during a ceremony and celebration given to them by the staff.

Afterwards, her room was filled with friends and family and caring staff, all sharing memories and staying present with her. Molly’s dear friend Lauren took a turn lying in her bed holding her for a few hours. Then Corey and I alternated in shifts, lying with her, holding her, telling her sweet memories and that she was loved and safe.

She passed in Corey’s arms knowing how loved she was, at 1:11 a.m. June 4th, 2013.

She lived 8965 days, most of which were more than tough.  Molly had 37 operations in her 24 years of life, and over 180 hospitalizations.

Molly touched thousands of people world-wide as she was well known for being positive and inspiring others to appreciate life and their health. . . right up to the end. Now, through the Molly Pearce-Eaker Foundation, Molly is continuing her mission to:

a)      Raise awareness of the importance of becoming a Registered Organ Donor
b)      Raising funds so that others awaiting transplants can afford to have their Moms, Dads, Brothers and Sisters, Fiancés travel to visit them and stay at the hospital for the most important wait of their life.   
c)      PLEASE HELP US KEEP MOLLY’S LEGACY ALIVE. KNOW THAT ANY DONATION NO MATTER HOW SMALL WILL HELP

In Synergy,

MelisaTo donate by check, send to: Molly Pearce-Eaker Foundation
                                                  P.O. Box 1106
                                                  Niwot, CO 80544

 

In celebration of Molly’s 25th birthday: