(Updates on Emma’s journey will be posted below. Please continue reading.)
Emma’s Remarkable Odyssey: Triumphing Against All Odds
Emma’s journey began with a unique challenge known as malrotation, a condition in which her intestines developed differently from the norm. While many individuals with malrotation live unaffected lives, Emma’s path took an extraordinary turn. As a toddler, she wrestled with chronic constipation, eventually leading to the stretching and collapsing of her colon. Her life-altering moment arrived at the age of 11 when she faced a sigmoid volvulus—a perilous twist in her colon that demanded her first major surgery.
A mere year later, another hurdle emerged in the form of an intestinal obstruction, attributed to scar tissue and adhesions from her initial surgery. With no remedy for internal scar tissue, Emma underwent yet another surgery to address the obstruction. This marked the start of an ongoing battle, with each passing year bringing multiple obstructions due to surgical scarring. Astoundingly, between 2016 and 2023, Emma endured an astonishing total of 11 surgeries.
Emma had gone two years with no surgery, and we sincerely thought we were good to travel for our summer holiday since she was doing well. Then, during a summer vacation in the US Virgin Islands July 2023, life took an unforeseen and alarming turn. Emma fell gravely ill, wracked with excruciating pain that prompted us to urgently seek help at the emergency room. Given her medical history, we were not entirely surprised by the sudden illness. We however learned that Emma was grappling with a volvulus in her small intestine—a twist so severe that it had severed blood flow and necessitated surgical removal to prevent sepsis. We were air lifted to the Miami Transplant Institute at Jackson Memorial Hospital after this pivotal procedure.
The small intestine plays a vital role in nourishing our bodies, and with Emma’s small intestine no longer in place, she now relies on intravenous (IV) nutrition. Her only path to a semblance of normalcy lies in a small bowel transplant—a procedure that has anchored us in Miami. Even after the transplant, we will need to remain in Miami for an intensive six-month post-surgery recovery period. Meanwhile, back in Dallas, Emma’s older sister, Nicole, manages the household and cares for our new puppy, Leo.
Our family faces a growing financial burden—maintaining our life in Dallas while also shouldering the substantial expenses associated with Emma’s temporary relocation near the hospital. And all the medical expenses that come along with this process. During these challenging times, we humbly seek support. So, we have partnered with COTA for assistance with transplant-related expenses. Please consider donating to COTA in honor of Emma.
Emma embodies joy in our lives—a compassionate soul, a radiant smile that can light up the darkest of rooms, a devoted sister, an exceptional dancer, an enthusiastic cheerleader, and a loving puppy parent to Leo. Despite enduring a multitude of tests and procedures, Emma has consistently excelled academically, earning her place on the honor roll and dean’s list. She now participates in homebound schooling, missing out on her senior year and the memorable senior activities that accompany it.
Our fervent hope is for Emma to achieve complete healing, free from the pain that has characterized her journey.
Thank you for taking the time to read Emma’s story. If all you can offer is your prayers, we wholeheartedly welcome them, as we steadfastly believe that prayer has carried us this far and will continue to guide us on this challenging path ahead.
The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.
UPDATE: EMMA’S JOURNEY
December 12, 2023
We got “The call” we considered this an early Christmas gift that filled our hearts with hope. We were airlifted from Dallas to Miami, where we were admitted immediately upon our arrival.
December 13, 2023
Transplanted- Emma’s transplant was a beacon of promise. The surgery surpassed
expectations, and the days that followed were a delicate dance of progress and a glimmer of healing. The organ seemed to be functioning as it should, no signs of rejection, nor infection. Emma bravely started to walk on day 2 post-transplant, pushing herself towards recovery. She was doing so well her NG tube was removed on day 4 [(nasogastric tube (NG ) is a tube that is inserted through her nose into her stomach to drain it out while her body heals internally from surgery.] The tube is only used for limited periods, but this was record breaking for Emma we were all very excited she could start on a liquid diet.
Sadly, our excitement was short-lived as she began vomiting and the tube had to be put back in. A week and half in ICU seemed like a hurdle to overcome, until the unexpected twist. Two weeks later, Emma ‘s vomiting became worse, and she had large volumes of output from her NG tube, revealing that things were not moving down as they should have been. The doctors decided to perform an endoscopy (a procedure where the doctor uses a tube with a camera into her body through her throat so they can look inside.)
The procedure painted a paradox—her organ (small bowel) was in perfect condition, yet her stomach crippled by muscle loss. With heavy hearts, the doctors decided to revisit the operating room. This time to perform a procedure called Gastrojejunostomy, where they move and reconnect the organ directly to her stomach, this way her stomach would drain directly into the small bowel for easier emptying.
January 18, 2023
This day marked another chapter in Emma’s journey, we were filled with both hope and fear. The Gastrojejunostomy surgery went well it seemed we had a lifeline to a future filled with dreams. We left the ICU unit after just two days, and we had such optimism that the problem was resolved and we should start to see things flowing soon. Yet, the universe unfolded a cruel twist on this hopeful narrative. Two weeks post-surgery, the anticipated progress remained elusive. Nothing was moving or flowing!
On January 31 the doctors performed another endoscopy on Emma to see what was going on. The results were so disappointing and cast a shadow over Emma’s resilience as she faced another obstacle revealing the harsh reality – this “new” connection was not working! The reason was because her stomach muscles are completely paralyzed that everything is just getting stored in there and it’s not pushing contents down at all!
Emma was diagnosed with – Gastroparesis, (delayed gastric emptying.) Emma has never had issues with her stomach before, so this was very difficult to hear stirring a relentless storm of emotions.
Today is February 1, 2024.
Doctors are giving Emma some time for her new medications to work. With hopes that they will wake up her stomach muscles, in the meantime she is living with this NG tube going on two months now and although she is trying to stay positive, Emma is slowly starting to lose hope that she might not make her graduation or prom.
…Still in hospital. We sadly play the waiting game!
We thank you all for your prayers and continued support, WE NEED THEM NOW MORE THAN EVER! #ButGod… We are trusting God to find a solution for Emma.
Thank you!
I dedicate myself to join the family in prayer. I know and believe that in the fullness of time, Emma is going to be a testimony to many who are suffering the same condition. With God, all things are possible