SG. It’s a Race Against Time for Kylie — the Brave Little Girl Who Received a Double Lung Transplant Last Year in Texas After Being Born with a Rare, Life-Threatening Genetic Condition.

For Kylie and her family, the past year has already held more fear, faith, and fierce determination than most families experience in a lifetime.

Born with a rare, life-threatening genetic condition, Kylie’s earliest days were marked by hospital rooms, careful monitoring, and prayers whispered through exhaustion. Her tiny lungs struggled to do what should have come naturally. Every breath was a battle. Doctors eventually determined that a double lung transplant was her only real chance at survival.

Last year in Texas, that miracle finally came.

After months of waiting and enduring procedures that would test even the strongest adult, Kylie received new lungs — a gift that represented hope, sacrifice, and a future her family had almost been afraid to imagine. Those lungs were more than organs. They were her second chance at life. They were answered prayers.

For a while, it seemed like the nightmare had finally eased. There was cautious optimism. There were small victories. There was the fragile but beautiful rhythm of a child beginning to live beyond crisis.

Now, that hard-won miracle feels uncertain.

Overnight, Kylie’s mother shared a devastating update. At Children’s National Hospital, doctors have run every test imaginable trying to determine why Kylie’s condition has taken a worrying turn. Infection? Negative. Other common post-transplant complications? Negative.

One frightening possibility remains: graft failure.

Graft failure would mean that Kylie’s body may be rejecting the transplanted lungs — the very organs that saved her life. It is a diagnosis no transplant family ever wants to hear, and right now, it is the last explanation left to investigate.

“Texas is sending a plane,” her mom shared.

Kylie needs to be transferred while she is still stable enough to travel. Timing is critical. If this is graft failure, her condition could slowly and steadily decline. Acting quickly could mean the difference between intervention and irreversible damage. The medical team understands the urgency. So does her family.

There has even been discussion of reopening her chest to examine the lungs directly — an invasive and deeply serious step. It is something Kylie has endured before. The thought of her small body facing another major surgery is overwhelming for her parents, who have already watched her fight battles most children never have to know.

“I’m scared. Really scared,” her mom admitted honestly. “This just doesn’t seem fair.”

It is the kind of fear that settles deep in a parent’s chest — the fear of losing what you fought so desperately to save. After all the surgeries, sleepless nights, consultations, waiting lists, and prayers that led to her transplant, Kylie’s family now finds themselves confronting the unimaginable: the possibility that her second chance could be slipping away.

And yet, even in the uncertainty, they are holding on.

They are praying:

That this is not graft failure.
That her transfer is smooth and safe.
That her lungs stabilize.
That doctors find clear answers — quickly.

Kylie has already proven she is a fighter. She has endured procedures, recoveries, and setbacks with a quiet resilience that has inspired everyone around her. Her strength has carried her through moments when the odds felt impossibly heavy.

Her parents have never left her side. They have learned medical terminology they never wanted to know. They have advocated, comforted, and believed — even when fear tried to drown out hope. They have celebrated small improvements like major milestones and faced complications with a courage born out of love.

Right now, they need that love reflected back to them.

They need strength from their community. They need encouragement in messages and prayers. They need the reminder that they are not walking this frightening road alone.

Transplant journeys are rarely simple. They are marked by victories and vulnerabilities, by science and by faith. Kylie’s story is still being written. Doctors are working urgently. Plans are being made. A flight is being arranged. Every decision is centered around giving her the best possible chance.

As her family waits, they cling to hope — the same hope that carried them to transplant day. The same hope that helped them believe a miracle was possible once before.

If you could speak to this sweet little girl and her exhausted, heart-weary parents, what would you tell them?

For now, they are holding tight to faith, trusting that this chapter — no matter how terrifying — will not be the end of her story. They are praying that the miracle they once received is not over, but simply entering another fight.