Parents Of Child With One-Of-A-Kind Rare Disease Fear She Has Only Weeks Left

A toddler in the UK has been identified as the only known child with a uniquely rare disease first spotted during a routine pregnancy scan, long before she took her first breath.

Concerns began in 2022 when 45-year-old Stacie Hammond attended her 36-week check. Doctors noticed a troubling “dark patch” near her baby’s heart and moved quickly to investigate.

Further tests showed the baby’s lungs had collapsed and were filling with fluid. The team warned the family that the situation could be life-threatening without urgent care.

Even with those warnings, Harleigh Tidd, now three, arrived a few days later. Doctors gave her only a 13 percent chance of survival at birth, yet she held on.

After coming home, Harleigh soon became very ill. The same mysterious problem from the womb returned, and her lung collapsed again as fluid built up.

For months, no one could say why her lungs kept filling. Since December 2024, she has undergone 38 procedures in total, each one an attempt to stabilize her fragile health.

After many surgeries and assessments, specialists concluded that Harleigh has lymphangioleiomyomatosis and chylothorax alongside skeletal dysplasia — a combination so rare that doctors believe she is the only person in the world with this diagnosis.

The condition causes her lymphatic system to leak a substance called chyle into her lungs without control, making breathing a constant struggle.

Chyle is a milky white fluid that helps the body absorb fats in the small intestine. When it enters the chest, it creates dangerous pressure and fluid buildup.

Harleigh's condition is so rare, she is thought to be the only person in the world suffering from it SWNS

Because of how uncommon and complex her case is, doctors have now said there are no further treatments they can offer to slow or reverse the disease. They have told the family that Harleigh likely has only months left.

"It was getting more aggressive"

Stacie, who cares for Harleigh full-time in Gateshead, Tyne and Wear, said: "When Harleigh was born she was classed as a miracle baby because she survived."

"But we noticed Harleigh developing rashes and becoming ill and eventually we took her to A&E."

"It turned out that Harleigh's lungs had collapsed and filled with fluid - and every time they were drained they would fill again."

"This year we found out it was getting more aggressive."

"Harleigh's dad and I were told that we had come to the end of the road with her treatment."

"It's heartbreaking - of her three years, she's only spent about seven months out of hospital."

Her heart was pushed to the opposite side of her chest

Stacie first learned something was seriously wrong in August 2022 during a routine scan with her partner, 28-year-old Stephen Tidd.

Staff called in additional doctors to study the monitor. The image showed a collapsed lung packed with fluid that had shifted the baby’s heart to the other side of her chest, a sight that left the couple in shock.

Four days later, Stacie had an emergency delivery. Against steep odds, Harleigh survived.

Right after birth, doctors placed a chest drain to remove the fluid. A breathing machine supported her small lungs so they could rest and recover after the intense strain.

Harleigh's parents are hoping to raise enough money to give her one final holiday SWNS

Following a short stay, Harleigh went home and seemed stable at first. Then her condition turned again, and the symptoms returned without warning.

Stacie said: "Harleigh stopped eating and taking milk, and then her poo turned black."

They rushed to the ER. Tests confirmed her lungs had filled once more, and the medical team repeated the urgent treatment to drain the fluid and ease her breathing.

"There was nothing that could be done"

Over the next two years, the family cycled in and out of hospitals. One stay stretched to eight and a half months, a marathon of procedures, monitoring, and hard days.

Stacie said: "In September we were called into a meeting to discuss the situation."

"This was the day our lives were torn apart - Harleigh's condition had now made its way to her bowel, stomach and spleen and was spreading."

"There was no cure and nothing that could be done, they said."

"This was the moment we released our beautiful baby girl was going to die - our lives were totally shattered."

In late October, doctors placed what they believe will be one final chest drain. They expect it to work for roughly ten weeks before it stops helping.

When the drain is no longer effective, the family has been told that Harleigh may have only days left. Accepting that reality has been painful for everyone.

A specialist palliative team is now supporting them, and a Do Not Resuscitate (DNR) order is in place to honor the plan of care.

With time short, her parents have started fundraising to take her to Disneyland and make as many happy memories as possible.

Stacie said: "We want her to be able to go away and have an amazing time, with memories that will last a lifetime."

"We call her our little warrior princess - the disease has taken over her whole body but she has never stopped smiling."

"We want to raise awareness so that one day maybe doctors can find a cause or explanation as to why she developed this illness."

"We will donate her organs after she is gone to help save others in the future - she will make medical history."

You can support the family and find more about Harleigh's story at: https://www.gofundme.com/f/vpbn6-family-support