Kilkenny teen is fighting 'just to keep going' as fundraiser launched

“Beneath her smile, she’s fighting a constant battle every day.”

Up until February of 2024, Kilkenny teenager Maria Hogan had a life that revolved around school, friends and the sports she loved.

Unfortunately, in recent times, her world has become frighteningly small.

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Her illness began literally overnight. One morning, what seemed like an ordinary vomiting bug spiralled into a what would become almost two years of arduous pain.

It transpired that Maria was suffering from multiple serious abdominal vascular compressions that severely restrict blood flow to major organs.

Eating or drinking brings with it symptoms including relentless nausea, vomiting and extreme pain.

Even tiny sips of water can send her into a spell of dizziness and exhaustion.

Her hydration and nutrition have unfortunately become so compromised that hospital admissions for electrolyte instability are now routine.

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Her parents, speaking to Kilkenny Live, say she endures a level of pain and physical deterioration no young person should ever face.

She became trapped between paediatric and adult medical services; too old for one, too young for the other.

“She fell into the gap,” her mother, Imelda, explains, describing a month in hospital with no clear diagnosis and no consultant willing to take responsibility because of her age.

“We had to navigate this ourselves, become our own medical detectives.”

With no answers in Ireland, and while Maria continued to deteriorate, the family travelled abroad for specialist imaging.

Eventually, a 4D scan confirmed the rare multiple vascular compressions behind her symptoms, which is complicated further by Ehlers-Danlos Syndrome (a group of rare inherited conditions that affect connective tissue).

After the scan, the family, just to be certain, sought second and third expert opinions in the UK, Germany and Spain.

The opinions arrived at the same consensus, that Maria urgently needs complex vascular decompression surgery, which is not available to her in Ireland.

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“The longer it’s going on, the more she’ll deteriorate,” her mother Imelda says.

“She’s just a teenager trying to live her life, but she has this constant cycle of being in and out of hospital with life-threatening dehydration.”

Every attempt to eat brings with it an unimaginable agony to Maria.

Even on some of her better days, she is forced to push through severe pain, exhaustion and nausea.

Her care plan now includes a pain specialist to help her cope with symptoms so intense that she is on a level of medication that “no teenager should be on at her age.”

Despite this, and against all odds, Maria remains determined, cheerful and resilient, “like a swan,” her mother says. “She’s always smiling but underneath is fighting every single minute just to keep going.”

The operation that Maria needs is major open abdominal vascular surgery which is highly specialised and performed only by surgeons with experience in extreme, rare compression cases.

“It’s very serious surgery,” her father Damien says. “But for Maria, we have to make her life better.”

The specialist that the parents consulted abroad is confident that surgery can restore blood flow.

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They also confirmed that it would allow Maria to eat and drink again, relieve her symptoms and give her back a quality of life she has not known in almost two years.

For a family who describe themselves as quiet and private, turning to the public in the form of a fundraiser for medical treatment was the last thing they ever imagined.

“We never wanted any kind of public or social media attention,” Imelda says. “We’re generally a very normal, very private family but we were left in a situation where we had no choice but to fundraise to get Maria better.”

The GoFundMe launched for Maria’s treatment has already brought unprecedented kindness.

“It’s kind of overwhelming, the support,” Damien says. “We’re blown away by people we don’t even know. Humbled.”

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Despite this, the costs of urgent surgery, travel abroad, and the recovery she will need afterwards are far beyond what her family can manage alone. And time is not on their side.

Maria’s parents say all they hope for is the chance to give her life back and they are asking for your help, and that of the wider community, to give them a shot to make that possible.

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To donate to the fundraiser, and find out more about Maria, CLICK HERE