June 4, 2019 — June is a month full of family and fun, especially on the third weekend when families gather to celebrate dads. Father’s Day has become a very special holiday for the De La Cruz family of DeKalb, Illinois. Their prayers were answered when their son, Ricky, received a life-saving heart transplant from an unknown donor and then experienced another miracle nearly two years later when Ricky received a kidney, and a second chance at life, from his dad.
Ricky De La Cruz was the first born baby for excited new parents, Dori and Lalo. Ricky arrived in July 1998 and Dori remembers there were medical hurdles almost since the day he arrived. Right after he was born the baby stopped breathing for several minutes and his organs started to shut down. The baby suffered damage to his brain and kidneys. Dori and Lalo were scared and sad. They soon learned their precious baby boy had been born with Hypoplastic Left Heart Syndrome (HLHS), a rare congenital heart defect in which the left side of the heart is severely underdeveloped. The Centers for Disease Control estimates each year about 960 babies in the United States are born with HLHS, which equates to one out of every 4,344 U.S. babies born.
Dori remembers numerous doctors’ appointments, lab visits and checkups throughout the first years of Ricky’s life. As an infant and into his toddler years, Ricky also endured four open heart surgeries. Dori and Lalo were committed to raising Ricky just like they did their other children who were born after him — Bella, Nina and Sam. The De La Cruz family was strong in its faith and knew that together they would work to overcome whatever health challenges were ahead for Ricky.
When Ricky was a teenager he was diagnosed with Protein-losing enteropathy, which is a gastrointestinal problem that is typically brought on by heart failure. Ricky’s PLE diagnosis was a flag for his medical team who immediately referred him to Lurie Children’s Hospital of Chicago for further evaluation. In early 2016, the Lurie transplant team told Dori and Lalo that Ricky needed a life-saving heart transplant … and he needed it quickly. While both Dori and Lalo had known since his birth a heart transplant might one day be necessary to save Ricky’s life, the news still frightened them for many reasons.
One of those reasons was the astronomical cost of a transplant and the bills that were starting to pile up. During meetings with a transplant coordinator and a transplant social worker at Lurie Children’s, it was recommended the family research the Children’s Organ Transplant Association (COTA) as an avenue for fundraising to help with transplant-related expenses. Dori called COTA’s 800 number on February 29, 2016, and soon felt a sense of relief. She had many questions that were answered quickly and efficiently. On April 15th (the same day Ricky was officially listed for a new heart), Dori and Lalo signed and returned the COTA agreement.
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, so COTA’s model shifts the responsibility for fundraising to a community team of trained volunteers. COTA is a 501(c)3 charity so all contributions to COTA in honor of Ricky are tax deductible to the fullest extent of the law, and these COTA funds are available for a lifetime of transplant-related expenses.
There are many uncertainties facing transplant families and one of the most challenging is how long they will wait for ‘The Call’ saying an organ is available. Dori and Lalo only had to wait four days; Ricky’s life-saving heart transplant took place on April 19, 2016. “The day we got the call that Ricky was going to get a new heart I fell to my knees and cried,” Dori said. “We were so thankful and grateful for this gift of life but also so sad to know someone had passed away for Ricky to be able to live with a new heart.”
In early June 2016, a COTA fundraising specialist traveled to DeKalb, Illinois, to meet with the family’s volunteers and walked them through the entire process. Within days of their on-site training, the COTA team in honor of Ricky DLC was off and running, planning fundraisers and working with COTA’s team of professionals.
Ricky’s heart transplant went well but his recovery was rocky. Post transplant his kidneys were further damaged and he had to be placed on dialysis for a portion of his inpatient recovery time. Many residents of their DeKalb hometown participated in a large number of fundraisers their COTA volunteers organized and promoted. Local media outlets covered many of these COTA fundraisers and continued to share updates about Ricky’s transplant journey with their DeKalb-area readers and viewers. From skating fundraisers to biking events to t-shirt sales to the Mr. DeKalb High School Pageant the community displayed tons of support in honor of this COTA family.
“During the many days Ricky was hospitalized after getting his new heart, COTA funds helped us so much with food, lodging, gas and Chicago parking costs,” Dori said. “Our volunteers back home in DeKalb were working very hard to make sure the COTA in honor of Ricky DLC fundraising was successful so we could stay by his side. COTA removed a lot of burden and stress from our shoulders so we could concentrate solely on Ricky’s recovery.”
Ricky was released from the transplant center in early July 2016. He was able to return home. But from July 2016 to November 2016 there were numerous 65-mile one way trips to Chicago due to many follow-up appointments and lab draws. By the holidays, Dori and Lalo were starting to feel like Ricky was definitely on the road to recovery. However, this was not to be the case. His new heart was doing great, but his kidneys could no longer keep up due to the previous damage they had suffered.
Throughout the year of 2017, Dori and Lalo were once again travelling back and forth to Chicago in hopes that Ricky’s medical team would find a solution for his failing kidneys. In November, Lalo started the testing process to see if he was a suitable kidney donor for his son. Lalo said, “It is what you do to keep your kids alive.” More than a dozen other family and friends also volunteered to be tested as the donor for this beloved teenager.
On January 29, 2018, Lalo gave a kidney, and a second chance at life, to his firstborn son, Ricky. This time the transplant took place at Northwestern Memorial Hospital in Chicago. Lalo recovered quickly and was released in a matter of days; Ricky was able to return home on March 1st.
Since transplant Ricky has been living life to the fullest and doing all of his favorite things, which include watching comedy movies, watching the Three Stooges, hanging out with his girlfriend and going out to eat. According to Dori and Lalo, much of Ricky’s ability to live and enjoy his life once again is due to COTA.
“I remember that when we first heard about the Children’s Organ Transplant Association (COTA) from our transplant social worker, we were a little confused. But when we called the 800 number the staff took the time needed to explain in great detail how COTA could help. COTA has been by our side through Ricky’s TWO life-saving transplants. It gives us so much hope to know COTA is there to reduce our financial stress when the bills keep coming. During times when we are struggling, it is a blessing to know COTA support is available … for a lifetime.”
Thanks to COTA, an anonymous heart donor and to Dad Lalo, Ricky is stepping into adulthood. Dori and Lalo are thrilled he is now able to live on his own. Mom Dori says Rick is attending a new school that is helping him with his independence. At a recent medical appointment, they were told Ricky’s heart and his kidney are doing great. Dori is excited to hear how Ricky’s upcoming audition for a role in a local production of “Hairspray” turns out.
Dori and Lalo’s biggest dream is that Ricky remains healthy and continues loving life.
Happy Father’s Day to an amazing COTA Dad who is helping to make this dream a reality!