COTA for Emilee's Fight

Our Story

After basic training and AIT training in the United States Army, I met the man of my dreams, Sergeant Elliott. We found out we were pregnant with our first child much sooner than expected. The fear, excitement, anxiety, happiness, worry, and love filled our hearts simultaneously. Some parents wish for a boy or a girl. Some wish for blue eyes or curly hair. We never had a wish, we knew our baby would be perfect, no matter what.

Emilee was an incredibly determined and independently motivated little girl. She was that perfect ray of sunshine in our lives. She loved to try new things, especially the time she got a hold of scissors and gave herself a sweet side mullet at the age of 4. Emilee absolutely loves and adores her little sister, Kara, and their love of softball has really bonded them together. Em gives everything she has to anyone and anything all while doing it completely from the heart and with true compassion.

Emilee is driven, honest, thoughtful, spiritual, confident, and athletic. She always strives to give her best effort. She wears her heart on her sleeve and worries about others constantly. Emilee is very smart and actually taught herself algebra II while on homebound her junior year. She plans to be an accountant when she graduates from college. She is also a true animal whisper. Em has the kindest soul and has a smile the really lights up the room. Emilee and Kara are inseparable sisters who really enjoy each other’s company. She loves her friends dearly and is there for them whenever they need her. Emilee truly just embraces life to the fullest.

On Emilee’s 15th birthday in 2017, Emilee had an eye that was pink in color. So, the mom in me thought, “Oh it’s just pink eye- no big deal. We’ll get you eye drops and you’ll be on your way”, except her eye didn’t get better. The doctor tried prednisolone eye drops every hour while she was awake but that didn’t work either. Emilee was referred to Children’s Mercy Hospital. We found out through the Opthamologist that she had uveitis, but we didn’t know what was the cause of it. Emilee was sent from Opthamology to Rheumatology to be poked, prodded, and tested way more than any human, let alone teenager, should be. During these tests we found out her liver enzymes were elevated. Hepatology saw Emilee at the end of July 2017 and with a liver biopsy in August they diagnosed Emilee with Autoimmune Liver Disease. Her lab numbers never leveled out, so a second biopsy was needed at the beginning of 2019. That’s where we found out Emilee had autoimmune liver disease overlap with PSC (Primary sclerosing cholangitis), which is an autoimmune disease of the bile ducts. Her liver is Stage 4 cirrhosis.

This is so unfair for Emilee and yet she continues to face adversity. I wish I could say it got better but unfortunately, in the middle of this pandemic, on April 18th, 2020, Emilee had a GI bleed and was rushed by ambulance to the Children’s Hospital. Emilee required 3 blood transfusions within 12 hours prior to an emergency egd and one more blood transfusion while in surgery. During this egd they banded the varices in her esophagus. On May 7th, Emilee was supposed to walk across the stage to get her high school diploma but since the pandemic that has been unfortunately postponed. Instead on May 7th, Emilee went back for her 2nd egd to have her varices banded once again. Children’s Mercy went above and beyond to make this day special for her, especially under the circumstances. Emilee was so proud of her life and school accomplishments that she wore her cap and gown to the hospital. The hospital gifted her a really nice purple cup that matched her school colors along with a card that everyone who took care of her signed. As soon as the nurse was pushing her to surgery, she told us to follow her. To our complete shock and surprise, there were at least 50 nurses, her doctor, and other staff members lined on both sides of the hallway cheering her on and congratulating her on graduating high school.

In 2021 Emilee had the TIPS (Transjugular intrahepatic portosystemic shunt). TIPS is a procedure that involves inserting a stent (tube) to connect the portal veins to adjacent blood vessels that have lower pressure. This relieves the pressure of blood flowing through the diseased liver and can help stop bleeding and fluid back up.) After she had 8 egds done in a 12-month period. By having the TIPS she has only had 2 egds since and the varices in the esophagus are no longer a problem. She just had the TIPS revised in April to open it back up.

Emilee had completed the transplant evaluation except she had no problems for 2 years, so in February 2023 we received a letter stating it was no longer needed. Emilee has been hospitalized since Wednesday 6/7/23 at KU and was told by the liver doctor that Emilee is very sick and they are worried about her. Her meld score (Model for End-Stage Liver Disease score is a prognostic scoring system, based on laboratory parameters) is now a 16. KU is going to restart the transplant evaluation again and it’s up to the doctor when he puts her on the list, but I assume it would be soon. They have also said it’s time to think about applying for disability.

Emilee was also diagnosed with Sweet Sydrome in August 2020. She now takes Simiponi shots every month to keep the flares at bay. Emilee has been given restrictions on no lifting more than 20lbs and now a low sodium diet to top it off. Pray for Emilee now more than ever as she is one of the pickiest eaters and sodium is the way of life for her. Her angry liver has caused her to be very fatigued, but she is still putting on a good face even though she feels like one of her loves, softball, was taken away from her.

We are a strong family, but we can’t do this alone. We need your prayers, support, and help in any way you can. Every dollar you donate to COTA in honor of Emilee gets us one step closer. Your help makes it possible for Emilee to live. Thank you from the Elliott family!

#DeliverEmaLiver

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.