08 Oct Purple Galaxy Heart Creates a World of Opportunity for Florence Family

A situation where a child with autism needs not one, but two heart transplants by the age of eight could easily be devastating for a family. But the story of resilient Florence-area mother, Jill Nealy and her daughter Alonna, is one of hope, support and being in the right places at the right time to find help.

One of those places was Ronald McDonald House Charities of Central and Northern Arizona. For Jill, it was a safe haven where she could rest while Alonna recovered from her second heart transplant. Ronald McDonald House provided a homelike and safe space for Jill, her fiancé, her three children, and even their therapy dog, Tank, to stay together at no cost.

“I wish I could pluck up everybody with a child in the hospital and dump them at Ronald McDonald House so they could experience this feeling. We may not have had it all figured out, but at least we were together,” Jill shares.

Her most recent stay at Ronald McDonald House enabled Jill to create a bond with other families who had hospitalized children facing life-threatening illnesses. These families became close friends, providing a listening ear, celebrating small victories together and sharing advice from a perspective few parents will ever have. Some even started a small homeschooling group which provided additional support for Alonna.

This wasn’t Jill’s and Alonna’s first experience with Ronald McDonald House. When Alonna was only five months old, she was diagnosed with a rare congenital heart condition called anomalous left coronary artery from the pulmonary artery (ALCAPA). The condition caused poor oxygen supply to her heart, and surgery was needed to reroute the blood flow.

Although the procedure was successful, just a month later, after a cardiac event resulting in an emergency helicopter ride to Phoenix, Jill was told her daughter would need a heart transplant. At 10 months old, Alonna was matched with a heart and received her first transplant after only 11 days on the waiting list. That’s when Jill first found respite at Ronald McDonald House, a place for her to sleep, eat and gather strength between long days at the hospital.

As Alonna grew older, she began asking about the scars on her chest from her first transplant. Jill explained that her heart hadn’t been working, and doctors had to give her a new one. Since Alonna loved the color blue, they called it her “Special Blue Heart.”

Alonna’s journey has been difficult. She faced life-threatening organ rejection twice, and it wasn’t until this January, at eight years old, that her Special Blue Heart finally tested rejection-free. With hope on the horizon, the family moved into a new home, and Jill began making wedding plans.

But only a few months later, Alonna suddenly stopped eating. Jill knew something was wrong. A routine procedure showed aggressive coronary artery disease, and Alonna needed another heart transplant. She was admitted in mid-March, and after weeks of waiting, received her second new heart at the end of April.

To help Alonna understand the second transplant, Jill explained that her blue heart was sick and she would need a new one — a mystery color, just like the mystery reveal videos Alonna loves watching on YouTube. Alonna hoped for a “Purple Galaxy Heart,” and when she woke up after surgery, she whispered, “I can feel my heartbeat. I have a Purple Galaxy Heart,” before falling back to sleep for several more days.

Alonna was released from the hospital in July and stayed at Ronald McDonald House with her mom and Tank until the end of the month so she could be close to the hospital during her recovery. Her sisters and her mom’s fiancé also stayed with them as often as possible so the family could be together. Ronald McDonald House became the place where they could all celebrate the world of opportunity Alonna was given to thrive and grow with her new Purple Galaxy Heart.