Father's Day Has New Meaning For IL Family After Life-Saving Gift

DEKALB, IL — Ricky De La Cruz and his family believe in miracles. The 20-year-old has received life-saving transplants not once, but twice after battling a congenital heart defect since birth. This year, Father's Day will have a special meaning for the family after dad Lalo gave his son a life-saving gift, two years after Ricky received a heart transplant.

Ricky's health struggles began at birth. The firstborn child of parents Dori and Lalo, Ricky was born in July 1998. His parents' joy quickly turned to fear as baby Ricky stopped breathing for several minutes and his organs began to shut down.

The couple soon learned their 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 that each year, about 960 babies in the United States are born with HLHS, meaning just one out of every 4,344 babies has the condition.

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 endured four open-heart surgeries.

The De Laz Cruz family welcomed three more children — Bella, Nina and Sam — and vowed to raise Ricky just like his siblings. But Ricky's health struggles continued.

As a teenager, he was diagnosed with protein-losing enteropathy (PLE), a gastrointestinal condition 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 fear 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, the family was advised to research the nonprofit Children’s Organ Transplant Association (COTA) as an avenue for fundraising to help with transplant-related expenses.

Dori called COTA’s 800 number on Feb. 26, 2016, and soon felt a sense of relief as COTA staff were able to answer her many questions.

On April 15th — the same day Ricky was officially listed for a new heart — Dori and Lalo signed and returned the COTA agreement. All contributions to COTA in honor of Ricky are tax deductible and can be used for a lifetime of transplant-related expenses.

While one uncertainty for transplant families is not knowing when they'll get "the call" that an organ has become 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 to meet with the family’s volunteers and walk 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.

Residents of DeKalb rallied around the De La Cruz family, participating in multiple fundraisers the COTA volunteers organized and promoted. 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 the 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.

Ricky was released from the transplant center in early July 2016 and was able to return home. But from July 2016 to November 2016, the family took numerous 65-mile one-way trips to Chicago for 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 — but complications arose. His new heart was doing great, but his kidneys could no longer keep up due to the damage they had suffered.

Throughout 2017, Dori and Lalo were once again traveling 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.

"It is what you do to keep your kids alive," Lalo said More than a dozen other family and friends also volunteered to be tested as the donor for this beloved teenager. It turned out Lalo was a match for his son.

On Jan. 29, 2018, Lalo gave a kidney — and a second chance at life — to his firstborn son. 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 1.

Since the kidney transplant, Ricky has been living life to the fullest and doing all of his favorite things, including watching comedy movies and the Three Stooges, hanging out with his girlfriend and going out to eat. Dori and Lalo say they credit much of Ricky’s ability to live and enjoy his life once again 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," Dori said. "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 dad Lalo, Ricky is stepping into adulthood. Dori and Lalo are thrilled he is now able to live on his own.

Dori Rick is attending a new school that is helping him with his independence. At a recent medical appointment, the family was 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.

Article submitted by Children's Organ Transplant Association (COTA)