In a heart-wrenching battle for their son’s life, the parents of four-year-old Louis Dagger are desperately trying to raise funds for surgery after the NHS allegedly refused to perform the procedure he urgently needs.
Louis, born with a life-threatening heart condition and diagnosed with DiGeorge syndrome, faces an uncertain future as his family navigates an increasingly difficult situation.
Louis’s Journey: A Lifelong Fight for Survival
Louis Dagger was born on March 1, 2021, with DiGeorge syndrome, a condition that resulted in a congenital heart defect.
His parents, Ian and Helen, watched as their son underwent his first surgery at just six months old at Bristol Children’s Hospital.
The operation was partially successful, repairing two-thirds of his heart, offering hope for his future.
However, hope was short-lived. Four months after the surgery, Louis suffered a cardiac arrest due to complications from sepsis caused by a malfunctioning feeding tube.
He was left with a hypoxic brain injury and developed critical care myopathy. Af
ter a grueling 17-month hospital stay, Louis was discharged to his home in Merthyr Tydfil, where he has since been doing daily physiotherapy to regain movement and improve his neurological health.
A New Setback: Heart Conduit Narrowing and Denial of Surgery
Louis’s parents were initially relieved when their son showed signs of progress.
But recently, Louis contracted H1N1 avian flu, and during subsequent tests at the University Hospital of Wales in Cardiff, doctors discovered that the plastic conduit fitted during his previous heart surgeries had narrowed as Louis had grown.
This narrowing, according to Louis’s mother, was anticipated, and part of the surgical plan had been to upsize the conduit.
But when doctors contacted Bristol Royal Hospital for advice, the response they received was unexpected: Bristol declined to perform the necessary surgery.
This decision, Helen believes, was influenced by Louis’s neurological disability.
The family feels as though the hospital no longer sees Louis as a candidate for treatment, despite his ongoing struggles and clear need for further intervention.
A Desperate Search for Solutions: Fundraising to Save Louis
Now, with limited options available through the NHS, Louis’s parents have launched a campaign to raise funds for private surgery, either within the UK or abroad, to save their son’s life.
Through a JustGiving page, the family hopes to gather enough money to afford the costly procedure.
Despite this, they have encountered frustration and confusion as they struggle to get answers from the hospitals involved.
Helen expressed her disbelief, saying that they feel as though Louis is being sent home to die, even though a treatment is available.
“It’s devastating,” Helen shared. “Louis has fought so hard, and we want him to have the chance to live a full, happy life.”
Ian, Louis’s father, is also doing everything he can to raise awareness and funds, even signing up for a charity comedy night—an act that, according to Helen, is completely out of character for him.
The family is exhausted but determined, with every penny raised going directly to Louis’s surgery and ongoing care.
The Emotional Toll on Louis’s Family
The emotional toll on Louis’s parents and siblings has been immense.
Louis’s older siblings, especially his 11-year-old brother, have stepped up to help with fundraising efforts, showing incredible maturity despite the overwhelming situation.
Helen shared, “Our kids have been amazing, but as parents, it’s incredibly difficult.
We are shattered emotionally and physically.”
Louis’s parents also shared how each moment with their son feels precious, as they are always aware of the gravity of his condition.
“Every nice memory, every smile we get from him, hangs over you,” said Ian.
“You just can’t switch off and enjoy him because you’re constantly worried it could be the last time.”
A Fight for Louis’s Future: A Call for Support
The Dagger family’s fight is one of love, hope, and determination.
They want nothing more than to see their son grow up surrounded by the love of his family and live a life full of joy.
Despite their struggles, they remain hopeful that through community support, Louis will get the surgery he needs and continue his fight for life.
As the family moves forward, they continue to appeal for donations to fund Louis’s treatment, hoping that their plea will reach those who can make a difference.
The JustGiving page remains active, with just over £800 raised at the time of writing.
Dr. Rebecca Maxwell, Chief Medical Officer for University Hospitals Bristol and Weston NHS Foundation Trust, has stated that they always aim to act in the best interests of their patients, emphasizing compassion, dignity, and respect in their treatment decisions.
However, details about Louis’s case remain private.
For now, Louis’s family remains hopeful that a solution will emerge, and they continue to push forward with their efforts to secure the care their son desperately needs.