Sisters are ‘fighters’

Community rally around Virginia family with two seriously ill daughters

The mother of a seriously ill baby and another daughter facing urgent spinal surgery is overwhelmed by the public’s support for her family after their life savings were washed away in a tide of mounting medical bills.

But broadcasting the family’s financial predicament wasn’t a decision mum Colleen Smith took lightly.

When the Celt speaks to Colleen she is staying at the Ronald McDonald House, which accommodates and supports families of seriously ill children attending Crumlin Children’s Hospital.

It was after the family’s car came to a shuddering halt, with mechanics saying a whole new engine is needed, that Colleen says “the last straw” was well and truly broken.

To date an online fundraiser has raised over €5,000. The target of €22,000 is still some way off however.

With Colleen staying with their infant daughter Aoife in Dublin, dad Toby stays at home to care for the Virginia couple’s other daughter Madison, while also trying to maintain “as normal a life as possible” for their 10-year-old son James.

He has seen a substantial reduction in his self-employed income due to changes in the industry in which he works due to more advanced AI tools.

“Living there, and staying up [in Dublin] as well, you’re essentially running two households,” states swim coach Colleen, whose youngest Aoife was born on February 26 last year.

Just two days’ old, Aoife had major abdominal surgery to remove all but 11cm of her small bowel because it had twisted while she was in the womb.

It has left little Aoife with a condition called “short gut syndrome”, requiring Total Parenteral Nutrition (TPN), a procedure where all nutritional needs are provided intravenously through her heart for the foreseeable future.

When the problem was first identified, Colleen says her family were warned their daughter could require hospitalisation for at least a year. “She is now 14 months old and we’re still in hospital,” she says.

After a lengthy stay at Temple Street for the first months of her life, Aoife is now being cared for by medical staff at St Peter’s Ward in Crumlin, where the main gastrointestinal medical team is located.

Her recovery hasn’t been straightforward. In the past year, Aoife has suffered from sepsis on multiple occasions, weakening her already vulnerable condition.

Colleen and Toby’s 15-year-old daughter Madison, meanwhile, was diagnosed with a painful but benign slow-growing tumour on her spine in October last year, that has caused her to suffer from scoliosis or curvature of the spin.

Initially doctors thought it “growing pains” but Madison continued to suffer fainting spells and a loss of power to her legs. The tumour later found is “quite large” and takes up a sizeable portion of the young girl’s chest cavity.

Madison underwent surgery back in February, but as Colleen explains it “didn’t go as planned”.

The next operation may require Madison to travel abroad. Her scans have been sent to specialists worldwide, and the family is clinging to hope before the tumour causes any more damage.

In the interim, the teenager has had to learn how to walk again.

Colleen and Toby moved to Cavan about 10 years ago.

From Navan originally, Colleen says both her daughters are “real fighters”.

In the background, as Colleen speaks, little Aoife can be heard making plenty of noise.

Colleen suggests the one year old could “tell her own story”.

Big sister Madison is “such a good kid” says doting mum Colleen, all too well aware of the possibility her daughter may lose the ability to walk permanently if doctors can’t come up with a solution to treat her worsening condition.

“She had the first operation. It didn’t go well. There was always a risk it wouldn’t and these things happen when you’re dealing with the spine, so she has had to learn how walk again.”

To explain just how determined Madison is, Colleen says over four weeks post-surgery her daughter managed to progress from a wheelchair to now walking with the aid of a crutch.

“She’s really incredible, she has so much strength I don’t know where she even gets it from. She is really determined to get healthy.”

Regardless of the financial burden, the emotional strain of having two daughters with serious health problems has also taken its toll.

“I’m not going to lie, the whole thing has been devastating, for us as a family, for me as a mum. To have one child with a complex condition you might say ‘okay’, learning how to cope with that and after nine or 10 months saying ‘we can do this’. But then for Madison to be diagnosed as well, and because it came out of no where, you really feel up against it. We hoped maybe it was just scoliosis, spinal fusion and move on, but it wasn’t just that.”

If it wasn’t for the Dr Michael O’Sullivan, Consultant Orthopaedic Surgeon at Temple Street, Colleen is unsure whether the tumour would have been picked up. “So we have that to be thankful for,” says Colleen, stretching to take the positives out of every situation the family faces.

Aoife’s fight also continues. “We were told she would be born small. She came into this world fighting. She has had to fight for every day since.”

Search for a house

To get Aoife home Colleen and Toby have to be trained in home TPN administration. Another requirement is that the family fits out a room to accommodate the equipment needed, space they don’t currently have, meaning that they have been scouring the internet trying to find a new home to rent.

On top of the cost of putting food on the table, paying rent and other essentials, Colleen estimates the family have burned through upwards of €20,000 trying to cover the cost of having to constantly travel between Cavan and Dublin for medical appointments.

“We used the last of our savings two weeks ago on a new car because we needed one desperately to get to and from Dublin. This hasn’t been easy to do, to ask people for help, but we’re living in a situation where this bill has to be paid next week, x and y is due. We try to manage money as best we can, and we’re trying to keep things as normal as possible for James. But his two sisters are really sick. Madison is still facing another surgery, when they finally figure out how they are going to do it.”

Coleen says that Aoife and Madison still have a “long fight” ahead of them, but that the help the family have received from the public already will go a long way toward alleviating the financial strain as they “continue to fight alongside them”.

“We can’t thank people enough, for the love, support, and prayers we’ve received, thank you from the bottom of our hearts.”

To donate to the fundraiser, click here.