BETHANY, Okla. (KFOR) – “You can color shoes and this,” Jaxon Lee said.
Jaxon is not really bossy.
“Let me know when you’re done, ok?” he said.
He’s just outgoing.
“He is a seven year old boy,” his mother, Rachel Lee, said.
And if you know anything about little boys, you know why Rachel is chuckling.
“He likes to dance and play with tape. He rolls the tape, plays with Play-Doh,” she said.
Tape and Play-Doh are staples in any guy’s toolbox of toys.
“He talks to everyone,” Rachel said. “He doesn’t meet a stranger. He always asks everyone ‘Who are you? What’s your name? What are you doing? Can I come to your house?’”
Either being so inquisitive is just his nature, or maybe it is something he and his family have learned to be. About two days after his parents brought him home from the hospital, something changed. His appetite dwindled and, not long after, his little body went limp.
“We rushed him to the emergency room where we found out pretty quickly that he had hypoplastic left heart,” Rachel said.
Jaxon was immediately admitted to the hospital, and at about 10 days old, Dr. Harold Burkhart performed Jaxon’s first heart surgery. But at two months old, Jaxon wasn’t well enough to undergo another surgery and needed a heart transplant instead. He and his family flew to Little Rock, Ark., where Jaxon was placed on a transplant list. Oklahoma doesn’t have that type of heart program…yet.
“We think it’s very important. That’s why we’re pushing to get a transplant program. We have the doctors here who can take care of Jaxon’s heart transplant,” Burkhart said. “But if you have to go five hours away to St. Louis, you essentially have to move your family or not see your family for several months as you’re on a waiting list possibly, and after surgery, often they want you staying there three months before you come back.”
At first Jaxon’s body rejected the transplant. He is better now, but the journey has been challenging. Transplants are not easy for anyone or their families. Jaxon has two brothers.
“If we could do it here, I think it makes a world of difference in those patients who need to have a heart transplant, and to their families and their siblings,” Burkhart said. “When they got me on board here seven years ago, that was kind of the plan. We wanted to make it so that one day the heart kids would not have a reason to leave this state, and we’re not going to stop until we get there.”
Jaxon’s immune system is essentially nonexistent right now, and with the COVID pandemic, he and his family have not left their home.
“We do live day by day. We take everything one day at a time,” Rachel said. “We never know what tomorrow will bring with Jaxon.”
They are just grateful for today.
To nominate a child to be featured on “A Heart 4 Kids”, email Jeremiah-Lane@ouhsc.edu.
This segment is sponsored by The Children’s Hospital Foundation. If you’d like to donate to the Children’s Hospital Foundation to help keep this and other life-saving medical programs here in Oklahoma, visit CHFKids.com