Since Lola Rose Larson was born April 14, 2020, she has endured a pretty tough 18-month journey.

Soon after leaving the hospital and arriving at her new home, the hospital called to let us know that Lola’s newborn screening results showed a positive result for Galactosemia, a rare, hereditary metabolic disorder that affects her body’s ability to convert galactose. This condition results in her following a strict diet for the rest of her life along with some other possible complications. After we received the results, Lola was readmitted to the hospital. We spent a long weekend in the NICU, where the doctors ran additional tests and confirmed the Galactosemia diagnosis.

Once Lola returned home, we began to process and better understand her Galactosemia diagnosis. At the same time, we noticed Lola appearing increasingly jaundiced. When she was sixty days old, we went to Children’s Hospital for a range of tests and scans. Based on the results the doctors determined that Lola would need a liver biopsy. Three days later, during the biopsy, the doctors shared life-changing news that they were diagnosing Lola with Biliary Atresia, a rare liver disease. She immediately proceeded to undergo a four-hour, life-saving surgery, called a Kasai procedure. During a Kasai, the doctors re-routed a small portion of her intestines directly to the base of the liver, attempting to reestablish bile flow from her liver.

Lola recovered and healed over the following three months while we waited for feedback on the procedure’s success.  Thankfully the Kasai resolved her jaundice, and better stabilized her liver levels.

As we have experienced, life with Galactosemia and Biliary Atresia can be difficult. Lola currently takes a dozen prescribed medications and vitamins each day to keep her healthy and levels stable. To support positive weight gain, Lola received a nasal gastric feeding tube at 7 months. We give her daily and nightly tube feedings to encourage weight gain and growth.

This summer Lola contracted several respiratory viruses that caused a blood infection and put her in kidney failure, resulting in a two week stay in the PICU. It was the scariest two weeks of our lives, seeing how sick she had become and knowing there wasn’t anything we could do.

It was during this stay that Lola’s team of doctors decided it was time to evaluate her eligibility for a liver transplant. Something we always knew was a possibility, but thought it would be further down the road.  Given her condition, exposure to a similar virus would put her at risk of getting severely ill again, something her doctors didn’t want to risk.

  

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As such in early September, the doctors evaluated Lola and approved her to be put on the national liver transplant list. Now, we would wait for a new liver.

During the evaluation process, the doctors informed us that a living donor could volunteer to donate a section of his or her liver to Lola. The donated section of liver would grow with her for the rest of her life. And the donor’s liver would regenerate in a few months.

We knew that Mike, her dad, has the same blood type as Lola, so he volunteered to be evaluated and the doctors approved him to donate a portion of his liver. We are hoping the transplant can happen this year.

We are beyond grateful that this liver transplant will give Lola a second chance at leading a long and healthy life. 

While we are on a positive path in the right direction, we anticipate a long journey ahead for Lola, as she will endure this for the rest of her life. 

Lola is an amazing little girl, full of personality and energy. She is strong and resilient; the toughest girl we know.  She is our little unicorn.

We have been blessed with an amazing team of doctors, friends and family that continue to provide us with support. We are grateful for everyone’s continued encouragement as we brace this next chapter in Lola’s journey.

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.