The parents of four-year-old Louis Dagger are facing every parent’s worst nightmare.
Their son, who was born with a life-threatening heart condition due to DiGeorge syndrome, urgently needs surgery to survive.
But despite their pleas, the NHS has allegedly refused to perform the operation, leaving them scrambling to raise the funds themselves. Now, they are in a desperate race against time to save their little boy’s life.
A Challenging Start in Life
Louis was born on March 1, 2021, with a congenital heart defect caused by DiGeorge syndrome, a genetic disorder that affects chromosome 22.
At just six months old, he underwent a major operation at Bristol Children’s Hospital that brought him two-thirds of the way to a fully repaired heart.
Doctors were optimistic, believing he could grow up to live a healthy and normal life.
But fate had other plans. Four months later, Louis suffered a cardiac arrest due to complications from sepsis after his feeding tube malfunctioned.
The terrifying ordeal left him with a hypoxic brain injury and critical care myopathy.
After spending 17 months in the hospital, he was finally discharged and returned home to Merthyr Tydfil, where he now lives with his parents, Ian and Helen, and his five older siblings.
Thanks to daily physiotherapy, he has regained some movement in his arms and head and has continued to develop neurologically.
Another Devastating Setback
After two relatively stable years, Louis’s health took another hit.
He contracted H1N1 avian flu, and routine tests at the University Hospital of Wales in Cardiff revealed that the plastic conduit placed in his heart during previous surgeries had narrowed as he grew.
This was expected, and the plan had always been to replace it when the time came.
Louis’s doctors in Cardiff reached out to Bristol Royal Hospital, the experts in cardiology, to arrange the necessary surgery.
But instead of receiving the help they so desperately needed, they were met with devastating news—Bristol declined to perform the procedure.
According to Helen, this decision was not based on medical necessity but rather on Louis’s neurological disability following his stroke.
Parents Left in the Dark
Helen and Ian were blindsided. For years, Bristol had assured them that they would do everything possible for Louis.
Now, they were being told there were no further surgical plans for their son.
Even more frustrating, they weren’t informed of this decision until Louis became sick with the flu, just before Christmas.
“We’ve been kept at arm’s length,” Helen explained.
“We’ve been chasing answers, but meetings keep getting canceled.
We don’t even know who’s making the decisions anymore.”
A meeting between the hospitals in Cardiff and Bristol has finally been scheduled for next week, but the family fears it may be too little, too late.
Fighting for a Future
Feeling abandoned by the NHS, Louis’s family is now taking matters into their own hands.
They have launched a fundraising campaign to pay for the life-saving surgery themselves—either in the UK or overseas.
So far, just over £800 has been raised, but they have a long way to go.
“We feel like they’ve just sent him home to die, even though treatment is available,” Helen said.
“Louis has been through so much, and he’s still so strong and happy.
He’s not just a medical case—he’s our beloved son, a little boy who deserves a chance at life.”
A Community Rallies Around Louis
Despite the heartbreak, the family is doing everything they can to stay hopeful.
Ian is working tirelessly to raise awareness and funds, even signing up for a charity comedy night—something completely out of character for him.
Their children have also stepped up, helping with fundraising efforts in any way they can.
“Louis is doted on by his siblings,” Helen shared.
“Our 11-year-old son is especially close to him—they’re inseparable.
This whole experience has been incredibly difficult, but we’ve always been honest with our kids, and they’ve shown so much strength.”
For the family, every moment with Louis is precious. “Every smile, every happy memory is overshadowed by the fear that it could be the last,” Helen admitted.
“But Louis is full of love, laughter, and an unbreakable spirit.
He deserves to grow up in the arms of his family, surrounded by love.”
How You Can Help
The family has set up a JustGiving page to raise funds for Louis’s surgery.
Any donation, no matter how small, could make a difference in giving this brave little boy a chance at life.
If you would like to contribute, you can find the fundraising page here.
A spokesperson for University Hospitals Bristol and Weston NHS Foundation Trust responded to the situation, stating: “We always act in the best interests of our patients.
Compassion, dignity, and respect are at the heart of every decision we make regarding treatment.
It would not be appropriate to go into specific details regarding Louis.”
The Cardiff and Vale University Health Board has yet to comment.
For now, Louis’s parents are holding on to hope and doing everything they can to fight for their son’s future.
Their message is clear—Louis deserves a chance to live, and they won’t stop until he gets it.