Parents of child who is the only person in the world with rare disease fear she only has weeks left
Phoebe Tonks
Featured Image Credit: SWNS
A toddler from the UK has become the only child in the world to be diagnosed with a super-rare disease which was first spotted on a pregnancy scan before she was even born.
The condition first came to light in 2022, when Stacie Hammond, 45, went to her 36-week scan and doctors flagged a 'dark patch' by her baby's heart.
Further investigations revealed that the baby’s lungs had collapsed and filled with fluid, a condition which could potentially have been life-threatening.
Despite the worrying symptoms, little Harleigh Tidd, now three, was born days later and was given just a 13 percent chance of survival at the time of her birth.
Advert
Within days of arriving home Harleigh became sick, with her mystery medical condition causing her lung to collapse and fill with fluid, just like it had done in the womb.
Doctors initially couldn't determine what was causing her lungs to fill with fluid, leading the poorly little girl to undergo a whopping 38 operations in total since December 2024.
After the surgeries, medics determined Harleigh had a condition called lymphangioleiomyomatosis and chylothorax, alongside skeletal dysplasia - a combination so rare, doctors now believe she is the only person in the world to have that diagnosis.
The rare condition causes her lymphatic system to uncontrollably leak a fluid called chyle into her lungs.
Chyle is a milky white substance that plays a crucial role in absorbing fats in the small intestine.
Given the rarity of her condition, doctors have now confirmed there is no further treatment they can give the youngster to manage the disease, with Harleigh only having months left to live.
Stacie, a full-time carer for Harleigh, from 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."
Stacie first learnt her daughter was unwell in August 2022, when she went for a routine scan with partner Stephen Tidd, 28.
The couple looked on in panic as doctors were called into the room to look at the scan on the monitor, which revealed their baby had a collapsed lung which had filled with fluid and pushed her heart to the opposite side of her chest.
Stacie underwent an emergency delivery four days later, with Harleigh miraculously surviving despite the odds.
Immediately after birth, Harleigh was fitted with a chest drain to remove the fluid and was also supported by a breathing machine to take the pressure off her lungs while she recovered.
After a short hospital stay, Harleigh was discharged home, and seemed to be well for the first few weeks before tragedy struck.
Stacie said: "Harleigh stopped eating and taking milk, and then her poo turned black."
Rushing her to the ER, another round of tests revealed that once again the tot’s lungs had filled with fluid, with medics treating the condition for a second time.
Over the following two years, Harleigh and her parents were in and out of hospital, including one gruelling stretch which lasted for eight and a half months in total.
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."
Harleigh was fitted with one final chest drain in late October which will last for around ten weeks in total before becoming ineffective.
After this point, Harleigh will have a matter of days to live – something the family themselves are still struggling to come to terms with.
A specialist palliative care team have now been put in place alongside a Do Not Resuscitate (DNR) order.
In light of her condition and short life expectancy, her heartbroken parents are now fundraising to take her to Disneyland.
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