A couple from Canterbury say Harry’s HAT helped save their baby daughter’s life, prompting them both to get permanent tattoos in recognition of our organisation.
Amy and Kieran Peek are parents to four children, including baby Millie-Mae, who started to display concerning symptoms at the age of six months old.
A desperate search for answers led them to the website of Harry’s Hydrocephalus Awareness Trust and, within hours, the baby girl was undergoing life-saving emergency surgery to treat a dangerous build-up of fluid on her brain.
The family’s story highlights the extraordinary impact that small charities like Harry’s HAT can have.
A GRADUAL DECLINE THAT TURNED INTO A MEDICAL EMERGENCY
When Amy and Kieran decided to have their fourth child, they expected the experience to be straightforward. Although Millie had some early health concerns, she was allowed home and initially seemed to be developing normally.
She missed some early milestones including rolling and sitting up, but it wasn’t until she was six months old that more concerning symptoms began to appear.
“We noticed that her eyes kept crossing and uncrossing,” Amy said. “It was repeated. It could be 20 times within one minute. She was very lethargic and sleepy, and she had no energy. Where she would normally smile, laugh or babble – there was none of that no more. She’d sit there quietly for hours and was more or less unresponsive to everything.
“The scary part was that it didn’t just happen overnight. It was slowly, and she was gradually going downhill, so we didn’t see it.”
THE TURNING POINT: HARRY’S HAT
One afternoon, the couple turned to Google in an attempt to understand what was happening. During their search, they came across a list of symptoms on the Harry’s Hydrocephalus Awareness Trust website.
Kieran explained: “Amy found the website, told me what the symptoms were, and we both sat down and went through it. After that, we knew we needed to get her down to the GP ASAP.”
The couple told doctors they suspected hydrocephalus – a condition caused by a build-up of fluid on the brain. Their concerns were initially dismissed, but their persistence ensured Millie received a CT scan, which confirmed the diagnosis.
“If it wasn’t for coming across the information on Harry’s HAT’s website,” Amy said. “If we’d have left it a further two to three hours, we were told she could have suffered severe brain damage or even worse.”
“The information just opened our eyes… especially as it’s a condition that we’ve never heard of.”
Millie’s treatment journey was complex and traumatic. Her initial procedure failed, and she developed a serious infection, requiring a prolonged hospital stay and intensive treatment.
Despite these challenges, Millie survived and is now continuing her recovery under close medical supervision.
TATTOOS THAT SPARK CONVERSATIONS
Determined to give something back, Amy and Kieran – joined by Millie’s maternal grandparents – made a deeply personal commitment to the charity by getting permanent tattoos of Harry’s HAT’s bobble hat logo.
“We wanted to do something to help make people aware,” Kieran said. “We felt like we owed Harry’s HAT some form of recognition. I’ve lost count of how many times I’ve been asked questions about what the tattoo means, and then we explain what it is, and about hydrocephalus.”
The tattoos have become a powerful way of raising awareness, sparking conversations wherever they go.
Caroline Coates, CEO and co-founder of Harry’s HAT said; “Millie-Mae’s story is every parent’s worst nightmare, so we’re incredibly grateful she got the treatment she needed in time.
“This is exactly why Harry’s HAT exists; so families can spot the signs of hydrocephalus and act fast. Too many people have never even heard of the condition until it’s too late, so to hear our website helped save a child’s life is just incredible.
“The bobble hat tattoos are such a powerful tribute and are already getting people talking. For not only Millie’s parents, but also her grandparents, to permanently display our logo is amazing, and could ultimately help save another child’s life.
“A lot of parents don’t realise that routine head measurements are one of the key ways to spot hydrocephalus. Through our Get-A-Head campaign, we’re pushing to educate families about the importance of tracking their baby’s head size, and to change national policy so babies in the UK are monitored more often, and fewer cases are missed.
“If Millie-Mae’s story, and even the tattoos, help just one more parent spot the signs in time, it could make all the difference.”
A MESSAGE FOR SMALL CHARITY WEEK
Amy and Kieran are now sharing their story as part of Small Charity Week to highlight the vital role small charities play in saving lives.
They said: “Even as a small charity, you’ve made a big difference. If we can share our story… it might save one more child, or it might save 100.”
Their experience is a powerful reminder that small charities can have a life-changing—and life-saving—impact by providing information, empowering families, and helping children like Millie-Mae get the urgent care they need.
Every donation made to Harry’s HAT’s Big Give fundraiser during Small Charity Week (22nd–29th June) will be generously match funded by the Postcode Society Trust.
