June is a month full of family and fun, especially on the third weekend when families gather to celebrate dads. Father’s Day is a special holiday for the Larson family of Colorado Springs, Colorado. But this year it has even greater significance because this family of four will celebrate Father’s Day together, thanks to a life-saving liver transplant from Daddy Mike to Little Lola just 18 months ago.

Lola Rose Larson entered the world in April 2020 and was instantly adored by her parents, Abby and Mike, and big brother, Beau. But soon after leaving the hospital and taking their precious baby home, Abby and Mike received a telephone call from their medical team telling them Lola’s newborn screening results showed a positive result for something quite rare. Lola was diagnosed with Galactosemia, which is a hereditary, metabolic disorder that affects how the body processes a sugar called galactose. A small amount of galactose is present in many foods. It is primarily part of a larger sugar called lactose, which is found in all dairy products and many baby formulas. Mike and Abby were told this condition would result in Lola needing to follow a strict diet for the rest of her life … and they were told there could be other complications.

After receiving the initial test results, the baby was readmitted to the hospital. Lola, Mom and Dad spent a long weekend in the Children’s Hospital Colorado Neonatal Intensive Care Unit (NICU) where additional tests were run to officially confirm the Galactosemia diagnosis. Once the family was able to return to their home upon Lola’s discharge, they continued to read and research to better understand her diagnosis. Also once at home, Abby and Mike noticed Lola started to look increasingly jaundiced. In June 2020 when Lola was just two months old, the family returned to Children’s Hospital Colorado for additional tests and scans. Upon receiving those results, Lola’s medical team told Mike and Abby a liver biopsy needed to be performed on their baby girl. On June 20th, Lola’s doctors shared life-changing news with Mike and Abby -- Lola had Biliary Atresia, a rare liver disease.

Biliary atresia is a condition that occurs in a small number of infants when the bile ducts (the tubes inside and outside the liver) are scarred and blocked. Bile ducts carry bile from the liver to the gallbladder for storage and to the first part of the small intestine for use in digestion. In infants with this disease, bile cannot flow into the intestine; therefore, the bile builds up in the liver and damages it. Biliary Atresia is rare and affects about one out of every 12,000 infants in the United States. This disease only occurs in newborns and is slightly more common in female infants.

Once the medical team shared the diagnosis with her parents, Lola was immediately taken into surgery to undergo a four-hour, life-saving surgery called a Kasai procedure. During this surgery, Lola’s doctors re-routed a small portion of her intestines directly to the base of her liver in an attempt to reestablish bile flow from her liver. A Kasai procedure may slow or, in some cases, prevent the development of cirrhosis and liver failure.

All of this occurred just a little more than two months after the baby’s birth. The good news? Lola recovered and healed over the following three months while Mike and Abby anxiously waited to hear if the procedure had been successful. The family of four was together, once again, under the same roof. And it did appear the Kasia procedure resolved her jaundice and seemed to be stabilizing the baby’s liver levels.

“Our experience with Galactosemia and Biliary Atresia definitely made life difficult,” Mike and Abby said. “After her Kasai procedure, Lola was taking a dozen prescription medications and vitamins each day to keep her healthy and to keep her numbers stable.” Then in November 2020, Lola received a nasal gastric feeding tube to help with positive weight gain, which was very important to her recovery as well. Lola received daily and nightly tube feedings, administered by Mom and Dad, to encourage weight gain and overall growth. Lola was making solid strides in all areas.

But in June 2021, Lola caught several respiratory viruses that caused a blood infection and caused her kidneys to fail, which resulted in a two-week Pediatric Intensive Care Unit (PICU) stay. “This was the scariest two weeks of our lives, being at her inpatient bedside and seeing just how sick she had become. The worst part was knowing there was nothing we could do,” they said.

It was during this touch-and-go stay that Lola’s medical team determined it was time to evaluate her eligibility for a liver transplant -- something Mike and Abby always knew was a possibility, but thought would be further down the road when she was older and more stable. But the doctors did not want to risk Lola being exposed to a similar virus and becoming seriously ill once again.

Now that a liver transplant seemed to be ‘sooner instead of later’ for the Larson family, Mike and Abby started meeting with various professionals on the Children’s Hospital Colorado transplant team, including a transplant social worker who spoke to the couple about preparing for the many costs associated with a liver transplant. Mike started searching online for information about various organizations who help fully insured families with the many transplant expenses they could soon be facing. His online research took him to the Children’s Organ Transplant Association’s Get Started online link (https://cota.org/get-started/). In early August, he completed the online form to learn more about how COTA might be able to help.

In early September 2021, Lola underwent a full transplant evaluation, and the medical team approved her to be listed for a liver transplant but told the family it might be a lengthy wait. And according to Mike and Abby that is exactly what they did … settled in for ‘Lola’s liver wait.’

On October 12, 2021, the couple had their first (of several) conversations with COTA’s Family Outreach Specialist. They called COTA on their way home from the hospital with Lola. They shared that Lola was covered by good, private medical insurance. The family lived about 28 miles away from the transplant center; they did not anticipate needing temporary lodging at any point. They did anticipate that help with travel, meals and parking would be ongoing needs. Mike mentioned there were family members in another state who would likely share the COTA-provided website and perhaps would organize some virtual fundraisers.

On October 22, 2021, their signed agreement arrived at COTA’s Indiana headquarters, and the Larson family officially became part of the COTA Family and Lola became a COTA Kid.

The Children’s Organ Transplant Association (COTA) uniquely understands that parents who care for a child or young adult before, during and after a life-saving transplant have enough to deal with; therefore, COTA’s model shifts the responsibility for fundraising to a team of trained volunteers. COTA is a 501(c)3 charity so all contributions to COTA are tax deductible to the fullest extent of the law, and COTA funds are available for a lifetime of transplant-related expenses.

COTA funds can also be utilized for many of the expenses associated with a living organ donor who is tested and approved to donate a kidney or a portion of a liver. This became important for the Larson family when Lola’s transplant team informed Mike and Abby that a living donor could volunteer to donate a section of his or her liver to Lola. They were told the donated section of the liver would grow with her for the rest of her life. And the donor’s liver would regenerate in a matter of months.

On November 1st, a COTA fundraising specialist trained the family’s group of volunteers via telephone so fundraising for transplant-related expenses could begin immediately. The COTA staff member shared information about COTA’s fundraising process, fundraising templates, guidance and support, and the no-cost website they would be provided. COTA in honor of Lola was launched, and the website was immediately available for online donations to assist with transplant-related expenses.

Mike and Abby knew they could be waiting a long time for a deceased donor’s liver that was compatible with Lola. They also knew Mike had the same blood type as Lola. It was a fairly quick and easy decision Mike made to undergo the evaluation process to determine if he could be Lola’s living liver donor. After numerous tests and evaluations, the transplant team approved Mike to donate a portion of his liver to their daughter. Mike and Abby were scared, yet relieved, all at the same time. They wrote to their COTA supporters, “We have been blessed with an amazing team of doctors, friends and family that continue to provide us support. We are grateful for everyone’s continued encouragement as we face this next chapter in Lola’s transplant journey.”

On November 25, 2021, Abby blogged on the COTA for Lola website: “We received a final confirmation yesterday that both Lola’s and Mike’s surgeries will take place on December 3rd. Mike had a final pre-op appointment yesterday to run additional tests and discuss more of the details. All of the tests and labs look great. The surgeon told us Mike’s left liver lobe, which is about one third of his liver, is perfect for Lola! Mike will go into surgery first at a hospital about two blocks away from Colorado Children’s where Lola’s surgery will take place. Mike’s surgery will take 4-6 hours while simultaneously Lola will be getting prepped and ready for her new liver. Halfway through Mike’s surgery, his left liver lobe will be removed and transported to Lola. Once the liver portion gets to Lola, they will be able to complete her transplant surgery, which will last eight to 12 hours. We are soaking up lots of family time this Thanksgiving and preparing for this next hurdle. We are beyond grateful for all the support we continue to receive.”

On December 5, 2021, Abby blogged on the COTA for Lola website: So sorry for the long delay for this update. As you can imagine Friday, December 3rd, was an extremely long day. Mike and Lola were taken back for surgery at 7:30 am. Mike’s surgery was completed at 2:30 pm and Lola's was finished at 6. We are so happy to say both surgeries went exactly as planned. In fact, Mike's surgeon told us, "Mike could not have grown a better liver for his daughter if he had tried!"

They have both been recovering and although it has not been the easiest, they are rocking it! We are hoping Mike will be released soon. Lola is still in the PICU getting the best care from her amazing team of doctors and nurses. There is no timeframe yet as to when she will be released, but her doctors are amazed at how well she is doing. Again, we cannot THANK everyone enough for all the amazing support we have all received.

On January 27, 2022, Abby blogged on the COTA for Lola website: I am sorry it has been a while since we posted an update, but we were enjoying the holidays and having some much-needed family time. Things have been going great with Lola and her recovery. We take her in twice a week for lab work and checkups and we are so happy to report that her lab work continues to improve. Her weight gain has been good, so we got the final approval to remove her NG tube! In the next month or two her doctors will be running a few more tests to determine if her liver transplant was also able to cure her Galactosemia, so we are anxiously awaiting those.

Mike is also doing amazingly well. All of his post-op appointments have been great and he is feeling back to his normal self. He does not have another checkup until six months post-surgery.

Lola seems like a whole new little girl … full of so much more life and energy. It has been crazy to think about all she has gone through in her short life and seeing her today you would never even know it.

This process was hard and challenging, but very rewarding. We could not have done it without all the tremendous love and support we received from everyone. We would like to sincerely thank each and every one of you that offered thought, prayer and donations. It really means the world to us. We are ready for Lola's new chapter and excited to see what life brings.

In preparing to celebrate Lola’s second birthday, Mike looked back on the journey to date and said, “COTA has been such a gift for us. COTA has allowed us to focus on Lola … to celebrate with Lola … without the stress of the medical bills throughout this process. During a transplant journey we have learned there is so much stress, anxiety and worry. Having COTA has allowed us to be fully present and in the moment with Lola so we can cheer her on with each and every amazing milestone.”

On April 14, 2022, Abby blogged on the COTA for Lola website: This amazing girl turned 2 today. Lola continues to thrive post-transplant. She is growing bigger and bigger along with her "Bossy" personality. She has been going in for lab work once a week since transplant and every week her results continue to get better and better which means she is able to ween off some of her medications. She continues to impress us each day. We look forward to year three and feel very blessed to be where we are today!

According to Mike and Abby, one of the blessings for which they are truly grateful is COTA’s role in their transplant journey to date. “COTA has been a huge help for us as a family,” Mike said. “One of our biggest stressors during Lola’s transplant journey was the constant stream of medical bills that just kept coming. Even with good insurance, our out-of-pocket expenses continued to add up. When we heard about COTA and their commitment to transplant families, we knew this was something we wanted to be part of. COTA gave us peace of mind. We realized we made the right choice when COTA assured us that COTA funds would be available for a lifetime of transplant-related expenses.”

Today, Lola is three-years-old. Abby shares that she is a healthy and happy little girl. She loves playing with her friends at school, dancing and singing … and mostly hanging out with her big brother and mimicking everything he does. Lola still has to have lab work done every few weeks because her transplant team is still trying to adjust her post-transplant medications.

This Father’s Day, both Beau and Lola will likely be making cards to celebrate Daddy Mike. At some point during a future Father’s Day, Lola will likely hear the story about Daddy donating a portion of his liver so she could grow up to be healthy, strong and full of life. But the only ‘gift’ Mike will ever need is a lifetime of Father’s Days spent with both of his children.

Enjoy Father’s Day, Larson Family