At Christmas in 2022, our world changed forever when our daughter, Lorelei “Rori” Robertson, was diagnosed with Dyskeratosis Congenita, a rare telomere biology disorder. She was diagnosed with a hotspot called Revesz Syndrome which told the doctors that she was dealing with the most severe form of this disorder.

Just a few months later, in March 2023, Rori underwent a bone marrow transplant. It was a journey we never imagined our little girl would have to face, but she fought through it with an incredible strength that has continued to amaze us.

The last three years have been filled with so many things we hoped for after transplant. Rori has been growing, learning, laughing, and simply being a kid. We celebrated the little things and the big things. We watched her discover new interests, make memories, and become the funny, loving, determined little girl she is today.

Then, at the beginning of this year, we noticed something changing.

Rori’s oxygen levels began dropping when she played. At first, we hoped it was something temporary. But the changes continued. Before long, she was experiencing oxygen desaturations even while resting. She stopped wanting to play as much. She became less interested in activities she once loved. Walking became harder, and she simply didn’t have the energy or endurance she once did.

We knew something was wrong.

After months of testing and evaluation, we learned that Rori’s liver was contributing to the problem, and she needed another transplant. On July 9, 2026, Rori was officially listed for a liver transplant after receiving a diagnosis of Hepatopulmonary Syndrome. A very rare and progressive disease of the liver. 

Now, we are waiting.

Waiting for the phone call that could change everything.

Waiting for a liver match.

Waiting for the chance to bring our little girl home healthier and give her the opportunity to get back to being the kid she deserves to be, and to be able to start school. She sits and waits as others start Kindergarten this year. 

Rori has already overcome more in her young life than most people will ever face. She has endured a bone marrow transplant, countless procedures, hospital stays, medications, and setbacks, and yet through it all, she continues to show us what resilience looks like.

But Rori is so much more than her medical history.

She is a daughter, a sister, a friend, a giggly little girl, and someone who deserves the chance to run, play, learn, explore, and make memories without her body holding her back.

Today, our family is once again asking you to rally together around Rori as we navigate this next chapter. COTA is helping us build a community around Rori and her transplant journey, giving us hope and helping ease some of the financial burden that comes with a life-changing medical journey like this.

We don’t know exactly when the call will come. We don’t know what the next chapter will look like.

But we know Rori.

And if there is one thing she has taught us, it is that hope can carry you through the hardest days.

So we wait. We hope. We pray. And we continue to fight alongside our brave girl until the day we get to bring her home.

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.