COTA for Leonie

Our Story

Leonie was born with congenital heart disease. He had multiple surgeries and procedures at birth. He loves fishing and boat riding with his Pawpaw. He loves hanging out and playing games with his grandma, he calls her NaNa. He loves his bicycle the most.

In July 2023 when he was 7 years old, his heart started to fail. He went to the local hospital in Lafayette, Louisiana, and doctors found a blood clot. He was flown by Helicopter to New Orleans for evaluation. Then he was transported by helicopter to a Texas Hospital where in August of 2023 he was diagnosed with Chronic Heart Failure. And he didn’t qualify for a transplant. He was then flown back to New Orleans Children’s Hospital. Then grandma Leslie and Aunt Jennifer stepped in to ADVOCATE for Leonie. Leslie took 12 weeks FMLA from work. Doctors at CHNOLA applied and sent Leonie’s information to 6 different states with transplant hospitals for a chance to be accepted for an evaluation.

In October 2023, Doctors at Lurie Children’s Hospital in Chicago had a Virtual Interview with Grandmother Leslie and his Aunt Jennifer to evaluate them to be his caregivers. Lurie’s Hospital decided to accept Leonie. Then his grandmother Leslie quit her job of 42 years to be his caretaker full time for his lifetime. She lost her medical insurance by quitting work. It was pretty scary and emotional with lots of worries. She made a good amount of money to help all the 9 grandkids with their activities and school clothes etc. She was there for all the kids’ birthdays and every holiday to give them everything they needed. She didn’t want to leave them. She also left her dog. She parked her car in storage, not knowing how many years they would be gone.

Leonie and grandma Leslie were then air-med by Angel flight medical airplane from Louisiana to Chicago for a heart transplant evaluation. They flew and weren’t able to bring much but minimal clothing for both of them. His Aunt Jennifer took a private flight to meet them in Chicago. His Aunt Jennifer (caretaker 2) and cousin Jaiden have also moved to Chicago to be supportive and help Leonie on this journey. Jaiden now goes to school at CPS. Leonie has started school while in the hospital. He is so smart he started 2nd grade, although he had never been to school before. His teacher is so awesome, she has taught him how to read already.

After a month of evaluations with over 20 departments of doctors and teams, lab work and dental work etc., he finally got listed for a heart transplant. In November 2023 he was listed as a 1A patient on the organ donor list. Every day of this journey was a full day of tests, vaccines and procedures. He told Santa he wanted a new heart for Xmas. His grandma and Aunt kept him busy in his room for months waiting. His heart, the gift, came on St. Patrick’s Day 3/17/2024. We should have known the clue was his favorite color is green. In the city of Chicago where they dye the river green. God had his plan. We were overwhelmed with Joy. Crying happy tears.

His surgery and recovery went great. His new heart changed his color, he now had oxygen-rich blood flowing through his body. He is enjoying life. He was blessed and we are so grateful. He was then discharged a month later. They live at Ronald McDonald House, a great supportive charity. He still goes to doctor visits, Pt visits and Ot visits, eye doctors visit, dentist, lab work, clinics, and mental health visits. He is 7 years old. His birthday is soon; he will be 8 on June 30, 2024.

Chicago has been a very expensive cost of living. 3 times more expensive than we’re used to at home in Louisiana, Also while maintaining a home in Louisiana.  Leonie and his family caretakers need to live nearby Chicago hospital for a year post transplant for follow-up appointments.

COTA strives to remove any financial barriers to life saving support for Leonie. COTA assist with transplant-related expenses such as follow up care, weekly doctor appointments, and counseling services. When home in Louisiana, Leonie and a caregiver will be traveling to New Orleans and Houston, Texas, for aftercare appointments. COTA can help with other transplant-related expenses like travel expenses — to and from appointments, air travel, gas and parking fees, also lodging. With all the donations to COTA in his honor, Leonie will have a lifetime of support with Children’ Organ Transplant Association.
#LeonieSTRONG

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.